National Disability Radio

This episode of National Disability Radio highlights a recent disability rights victory in Colorado, where advocates successfully worked to repeal a law that permitted the forced sterilization of people with disabilities. One of our very own P&As, Disability Justice in Colorado, was instrumental in making this happen! Hear from policy leaders and self-advocates behind the effort as they discuss coalition-building, and why disability rights progress depends on keeping people with disabilities at the center of the conversation. **NOTE** Disability Law Colorado has recently rebranded to Disability Justice ! Check out their new messaging and branding on the web and across their socials: Disability Justice’s Website : https://disabilityjustice.co/ Disability Justice’s Social Media Channels Facebook: https://www.facebook.com/disabilityjustice Instagram: https://www.instagram.com/disabilityjusticeco/ YouTube: https://www.youtube.com/@disabilityjusticeCO The Arc of Colorado’s Website: https://www.thearcofco.org/ The Arc of Colorado’s Social Media Channels: Facebook: https://www.facebook.com/TheArcofColorado Instagram: https://www.instagram.com/arcofcolorado/ LinkedIn: https://www.linkedin.com/company/the-arc-of-colorado/ X (Twitter): https://x.com/thearcofco YouTube: https://www.youtube.com/@TheArcofColorado The Arc of the United States’ Website: https://thearc.org/ The Arc of the United States’ Social Media Channels Facebook: https://www.facebook.com/thearcus/ Instagram: https://www.instagram.com/thearc_us/ LinkedIn: https://www.linkedin.com/company/thearcus/ YouTube: https://www.youtube.com/@thearc_us Transcript: Michelle Bishop: Okay. Sorry, sorry. I can get serious. We can do this. Wait, are we recording? Alden Blevins: Yes. Michelle Bishop: Oh, okay. Stephanie Flynt McEben: Well, there's our cold open. Here we go. Michelle Bishop: Hi everyone, and welcome back to National Disability Radio, the official podcast of the National Disability Rights Network, where we share with you stories and conversations that advance the rights, voices, and leadership of people with [00:00:30] disabilities. I'm Michelle Bishop, one of your co-hosts, and today we are really excited to be joined by some of our own, two folks we were able to connect with through our own network of organizations across the US. We're going to be talking with Disability Law Colorado about some of the recent amazing advocacy work that they've been doing. But before we do that, I'm going to kick it to my co-hosts. Stephanie Flynt McEben: That's right. Hey, everybody. Stephanie Flynt McEben, public policy analyst with the National Disability Rights Network and two-thirds of [00:01:00] your podcast hosting team. But yeah, wanted to kick it off to our wonderful guests. Jack Johnson: Sure. Yeah, thank you for having me. So I'm Jack Johnson. I work at Disability Law Colorado as our public policy liaison, the one and only, so I'm a team of one here in Colorado, but am joined by a lot of great advocates in our network through our community partners, as well as all of the people that work at Disability Law Colorado who bring their lived experience to our policy [00:01:30] work and their expertise in their specific areas that they work in every day. And here in Colorado, we have a very busy legislative session and a very active legislature, which means we get to do a lot of fun work. And I get to work with Molly all the time, which I'm really grateful for, and I can pass it over to her. Molly Kirkham: Perfect. Well, yeah, thank you all. I'm Molly. I work for the Arc of Colorado as a legislative policy advocate, which basically means I get to talk to senators, [00:02:00] representatives, about bills and issues that matter to individual with disabilities. And aside from that, I'm also past president of SFO and vice president of Speaking for Ourself Colorado and People First. Speaking for Ourselves is a statewide group and People First is local. And I've always been connected to disabilities. Stephanie Flynt McEben: Awesome. Thank you so much, Molly. I'm going to pass on to Alden. Alden Blevins: [00:02:30] Yeah, I was just going to say I'm so glad that you're both here today. I think this type of legislative advocacy work is so important. I used to work at a P&A myself in Virginia, and back when I was doing their communications and kind of stressing the importance of the work, I kept coming back to the key phrase that changing laws can change lives. And I think that work like you guys have done on this bill that we're going to talk about today is something that could maybe be a blueprint for other P&As across the United States as they struggle with similar things [00:03:00] in their legislatures. So thank you so much for being here with us today. Michelle Bishop: Yes, we're excited to talk about this, especially anytime we get a chance to highlight some of the incredible work that's being done in our own network. That's our favorite thing to do. So first things first, let's get into it. For any of our listeners who might be unfamiliar, the big news is that Disability Law Colorado worked with their state legislature to get a new law passed that would end forced sterilization policies that are on the books. [00:03:30] Can you talk a little bit about what the law allowed and how long it was essentially on the books? Jack Johnson: Sure. Yeah. So as a little bit of a background, lots of states around the country have these laws. I think maybe a dozen or so have repealed them. Colorado now joins that list, but over 30 states still have these laws on the books, and it's unclear [00:04:00] how many states use them still. But the fact that they exist even here in Colorado has been a problem for us and something we've tried to solve. And so what the law did is it created a specific pathway for a court to order the sterilization of a person who has an intellectual or developmental disability over their objection. It was actually passed not that long ago, around the same time that the ADA was passed in the '90s and early 2000s, and amended [00:04:30] through that decade. But the reason it was passed is because before this, courts were just doing it, and it goes all the way back to our state hospital and practices of eugenics back in the 1920s all the way through to the end of the 1900s where there was different courts doing different things, but not a legal due process pathway. And so when it was passed, it was supposed to be more progressive by adding [00:05:00] due process protections and adding things to the law that would prevent these sterilizations from happening without judicial intervention or without clear judicial direction. However, here we are in 2026 and the consensus is pretty clear that one's progressive policy now is very regressive because it still through statute authorizes eugenics-level sterilization for people over their objection. Alden Blevins: Yeah. It's wild [00:05:30] to think that it was passed that recently to me. And you kind of delved into this a little bit with your answer, but I mentioned earlier, I'm a woman with autism and I'm personally all too familiar with the rich history of eugenics that is unfortunately a part of America's story. So I just wanted to ask, how do you see this connecting to the broader history of how people with disabilities are treated in the United States? I know I have my own answer, but I wanted to see if you had any thoughts. Jack Johnson: Yeah, I [00:06:00] mean it's very interesting. This is the year 2026. Buck v. Bell was passed in 1927, so we're coming up on the hundredth anniversary of that Supreme Court decision and the decision that still could theoretically be used as precedence in future cases. And after a hundred years of advocacy, we have other protective laws like the ADA and other things, but [00:06:30] this is the last final piece, I think, in terms of our legal protections that needs to come into place. And it's a really problematic history, especially here in our specific state, in Colorado, where we have a single state hospital, which used to be a large institutional setting primarily for people who have intellectual or developmental disabilities or behavioral health disorders. It has since been transitioned in a way that is more clinically focused, but [00:07:00] the building itself remains and the practice itself remains at least a theoretical possibility in the law. We've been as an investigative unit, as the P&A, obviously active in protecting people's rights. And there hasn't been a recent case, at least in the last 10 years where we've had to challenge one of these proceedings. But in an era now where other areas of disability rights are actually regressing, and we're seeing policies passed [00:07:30] that move us backwards, we took the opportunity to take that last step forward to pass this law. Stephanie Flynt McEben: Thank you so much, Jack. I really appreciate it. In talking a little bit about, obviously we both know this as public policy folks, but a lot of factors and things can come into play when trying to get a bill passed, let alone a bill signed into law. And so I was wondering if you could [00:08:00] talk a little bit about any political barriers, cultural barrier, any types of barriers that you might've encountered when advancing this piece of legislation? Because I can't imagine, as we all know, policy does not happen overnight. And so I'm sure that this has been a long time coming given the nature of public policy as well in general. Jack Johnson: Yeah. We have been fortunate that the bill passed, I think unanimously or close to unanimously, [00:08:30] through the vote chambers and got almost 100 votes of the legislators, but it wasn't easy. I think we started this project actually over a year ago during the 2025 General Assembly. And because of a lot of barriers to how slow things move in politics, as well as some of the policy questions related to this topic, it took us over a year just to get our appropriate bill drafted with sponsors in place [00:09:00] to run the legislation. And even as the legislation passed, I think there were especially folks who unfortunately, I think, still have the policy in mind that some level of eugenics is acceptable to them, that there was some outreach to the legislators and to us that this was the wrong direction to take and it would lead [00:09:30] to negative outcomes for people, which is surprising given the year that we're in, but maybe not all that surprising given some of the other areas of disability rights where we're seeing policies go backwards. But in spite of that, I think we had people like Molly and other people speak for themself who have lived experience with a disability, who, given this law, could be sterilized over their objection. And so having them speak in both of our panels of public testimony [00:10:00] in the House and the Senate was really, really powerful to the legislators and I think helped convince them despite the outreach they were getting from other folks that this was the right policy to pass. Alden Blevins: Yeah, that leads us so nicely into the fact that I think having buy-in from the disability community is always helpful when it comes to the world of legislative advocacy, because ultimately people want to hear from their constituents. So that said, could you tell us a little bit more about how you [00:10:30] engaged advocates with disabilities to help support you guys? Or you said maybe they delivered some testimony when advancing this bill. Jack Johnson: Yeah, absolutely. So Colorado's legislative session I think is like most states in that we start in January and we go through the spring and we're time-limited to the middle of May, 120 days after we start. So that's kind of the cycle that we all work on to pass public policy objectives, which means that at the end of every May or the beginning of every June, [00:11:00] we meet as an organization, as a P&A, and we talk about what the next year's objectives are. And that includes from our survey that we put out into the community issues that people are facing, as well as barriers that our legal teams are seeing with laws that are not working appropriately or that need to be changed or repealed or protections added for people with disabilities. And from there, we spend most of the summer meeting with all of our community partners. So all [00:11:30] of the organizations that represent and advocate for people with disabilities and who interact in this world. We have community round tables and do one-on-one meetings where we present what we think our priorities are going to be for the next year. We get input from our community partners and we hear what they're working on and what we can support them on as a collective. And from that round table, we usually come away with both our legislative priorities, but also our team's legislative priorities. [00:12:00] So everyone else who works in the legislature, who advocates here, we understand what every organization's doing and how we can partner with each other and support each other, and then testify in support of each other's legislation. And so from those community meetings, there was a lot of excitement about this bill, and they're open to the public. So it's not just if you are a part of an organization, anyone with a disability is welcome to join. And we have email lists that people then can join onto if they want to learn about particular [00:12:30] pieces of legislation throughout the summer and the fall as we advance them. And when it comes time to testify, we just notify our partners and anyone on those email lists to come speak their voice. And we've been fortunate the last couple of years because of all this community-building that we've done, that when we run legislation or our partners run legislation, there's always great turnout in supporting the rights of people with disabilities. And especially here in Colorado, we have had great success the last three to five years [00:13:00] in really passing impactful legislation, and this is just another example of it. Michelle Bishop: Jack, just congrats to you and to everyone on the work that was done here. And I believe it when you say folks were excited about doing work on this bill, because the historical perspective is one of the things that's really interesting to me. When I talk to folks I know from outside disability rights world, I think this is one of those issues that people think is, "This is old, this is from the past. There's a problem that should be solved. [00:13:30] This is not an issue anymore." But it's not just Colorado. Antiquated laws like these seem to stay on the books. They stick around even when notions of how we approach disability have changed. And I'm wondering why you think laws like this seem to have such staying power even decades after society has, I'll say for the most part, rejected these kinds of ideas. Jack Johnson: Yeah, you're right. We see lots of laws, not just this one, that seem antiquated but still [00:14:00] remain on the books. And I think there's a lot of reasons why. The first reason is that many of these laws, it takes an act of a governing body to change the law, and legislators only have so much time in their day and so much effort to run legislation across all of their constituencies. And so taking time to pass a law that maybe seems antiquated and doesn't do anything requires people to step up and ask for it to be changed. [00:14:30] It requires us as the P&A to devote our resources to repealing it and our community partners to come testify and a legislator to spend 120 of their days in legislative session to advocate for its passage. And so the inertia of getting any law passed small or large is big. And when you think about all of the different areas of disability rights that need attention, all the legal protections that need added or all the systems that need improved or all the old laws that need repealed, [00:15:00] sometimes it takes a lot to get all of those resources into place to repeal a law that may be old. But also there is a lot of institutional power that we take back in disability rights. And so institutions, the governments or state or local governments, large institutions related to healthcare or economic institutions, even [00:15:30] laws that they potentially don't use anymore doesn't mean that they would accept us removing them, taking them off the books, because that's taking away some of their perceived power. And so when you're looking at a government and we're asking it to give us more rights, give people with disabilities more rights and take away some of the power they have over people with disabilities, even if it's not power that they currently use, there is sometimes that institutional [00:16:00] resistance to allowing that change to occur. And so between those two things, sometimes it's hard to find a sweet spot where you can actually get something passed. Alden Blevins: Yeah, I think resistance to change is just something that we struggle with in general, but especially when it comes to those larger systems that you spoke so well about, it can really be hard to just change people's minds about the way something has always been done or the way [00:16:30] something has always been framed. Stephanie Flynt McEben: Oh, 1000%. Just talking about that, I think one of the things that really helps in terms of changing minds is really spotlighting the lived experiences of individuals with disabilities. And so with that, I do want to pivot our next question over to Molly. So Molly, I know that you have your own lived experience with disability, and I know that this topic is an incredibly heavy topic, [00:17:00] especially throughout the disability community. Do you remember how you felt when you first realized or learned about that a law like this was a thing or existed? Molly Kirkham: Yeah, I definitely can. For me, my first reaction I think was shock. Kind of like what you guys and Jack said, it's 2026, and I was shocked to hear that it's still happening and that it hasn't been. [00:17:30] Yeah, it's more of shock of, wow, we have so much progressed in thinking and how we value people with disabilities in the community, but it's still shocking to think that there's still stuff like for sterilization and that's still happening. And so to me, it's shock. And also that it's time that we address this. So, for real, shock and almost, not frustration, but just like, wow, how? And [00:18:00] almost like, yeah, because I wouldn't think that was still going on. So that shock of being like, okay, this is still happening, for me, I think it's more just [inaudible 00:18:16] 2026 and this is still going on. And I think that's how probably a lot of people feel, is the unknown too. It's like you don't know that's going on. So when you hear it, you're like, "Okay, let's do something about this." Stephanie Flynt McEben: Yeah, absolutely. And [00:18:30] I think that you hit a major point on the head, is a lot of people don't know what they don't know. And so I think that's a really huge point that hitting on is so important. And I definitely agree. It's 2026. You wouldn't think that laws like this would exist, or at least the average everyday person wouldn't think so, but you pull behind the curtain and this is what you see. I know that Alden has some lived experience that maybe she may be able to share too. Alden Blevins: [00:19:00] Yeah. So I was just going to say that as someone with my own lived experience with disability and my own trials and tribulations, especially with navigating some systems as a person with disabilities, I know that something that can be very hard for our community is trusting systems, especially the medical system, the healthcare system or the legal system. And I just wanted to ask you, Molly, how do you think that laws like these and their history affects [00:19:30] how our community

Video Version: What does it actually mean when disability advocacy is “level funded”? What are federal appropriations, and why are they such a big deal for disability rights? On this episode of National Disability Radio , Alden Blevins (Communications Manager), Stephanie Flynt McEben (Public Policy Analyst), and Eric Buehlmann (Deputy Director for Public Policy) pull back the curtain on the federal funding process and what it means for the Protection and Advocacy (P&A) network. They discuss the successful FY26 funding fight, why advocacy on Capitol Hill matters, and how everyday people can help. You also get the added bonus of hill-day survival tips, advocacy myths and truths, and a very important debate about coffee and tea. Transcript: Alden Blevins: Hello, and welcome to National Disability Radio. I am here today with two wonderful people who are about to introduce themselves. I am Alden Blevins, Communications Manager here at NDRN. I have my own lived experience with disability and I’m really glad to be here today. What about you guys? Who are you, What do you do? Stephanie Flynt…: Yeah, I’m Stephanie Flynt McEben. I am also one of your hosts of the podcast and NDRN’s Public Policy Analyst. And I have beef with a music streaming app, and I’m not going to talk about which one, but let’s just say that this [00:00:30] music streaming app told me that I was 67 for Christmas this year. And then it had the audacity to… Oh gosh, what was the playlist the other morning that was recommended? It was Old Camping Man Sunday Morning, and it was really weird. Why? I don’t listen to old camping man music unless James Taylor and Chappell Roan and Taylor Swift count as that. But anyway, hope everybody else is having a good day. And hey, if Spotify thinks [00:01:00] you’re old, you’re just… I don’t know. You’re young at heart, anyway. Alden Blevins: I think it clocked my age exactly. And I must say that I listened to a lot of Lady Gaga and Kesha in the last year. Stephanie Flynt…: Yes. Alden Blevins: And to be fair- Stephanie Flynt…: You were in the 2010’s era. Alden Blevins: They were still the two most popular artists when I was graduating from high school, so they clocked me. They clocked me for sure. Stephanie Flynt…: Oh my gosh. Time to introduce Eric, who is our Deputy Executive [00:01:30] Director for Public Policy. How are you doing? It’s great for you to be here. Eric Buehlmann: Great, it’s wonderful to be here. Evidently, your phone must be listening to my music then in that way [inaudible 00:01:44] Stephanie Flynt…: Maybe so. I don’t know what’s going on, but I don’t know how I feel about it. And also, I guess… I don’t know. I guess the Spotify age thing is eclectic because my top artist was Taylor Swift, so I don’t know. Anywho. Eric Buehlmann: So I’m Eric Buehlmann. I’m the Deputy Executive [00:02:00] Director for Public Policy. As Stephanie said, my first choice is not Taylor Swift, but my wife listens to it a lot. So when I’m in the car with her, that’s what I’m listening to. Alden Blevins: This is National Disability Radio. We are the official podcast of the National Disability Rights Network. The National Disability Rights Network works in Washington DC and around the country on behalf of the protection [00:02:30] and advocacy systems, the P&As and the client assistance programs or CAP. We are the nation’s largest provider of legal advocacy services for people with disabilities. The first thing we want to talk about is some big and good news. The P&A network was funded for the rest of FY26. Can we get a hallelujah? Stephanie Flynt…: Yay, woo-hoo! Alden Blevins: The first thing I was just going to ask is, Eric, can you explain to us why it’s a big deal that we were funded and level funded, [00:03:00] and kind of what it took for us to get to this point? Eric Buehlmann: In terms of being able to, why we were able to do this, it’s really our members reaching out to all the representatives, all the senators, making the case, all the good work that the P&As and the CAPs do, and showing all the examples and saying, “Look, if you don’t fund us, this is what’s going to happen, is that person with a disability is not going to be able to get accessible housing or accessible transportation, or the student’s going to be able to go to school or someone’s going to have an assistive [00:03:30] technology device or rampant abuse and neglect are going to be occurring in either the community or institution.” So they made those cases. Congress said, “We agree with you.” And the best we could hope for at this time was at least maintaining our funding and not losing it. Alden Blevins: I think it’s really important to remember that this is not just numbers on a spreadsheet, this has real world impacts on peoples’ lives, the lives of people with disabilities, whether or not they can access enforcement of their civil rights, so [00:04:00] super important. Stephanie Flynt…: Absolutely. Alden Blevins: Just to peel back the curtain and give a little more context for some of our listeners, I just want to go ahead and ask the kind of general question of what are federal appropriations and what does that really mean when we talk about them? Stephanie Flynt…: Yeah, sure. I’m happy to jump in a little bit here. Essentially what federal appropriations are is how Congress allocates funding. And so essentially, there is a long process as Eric kind of talked through a little bit [00:04:30] earlier, in terms of everything that’s been going on with the budget. And so individuals are able to make various appropriations requests to their office. But essentially in a nutshell, it’s essentially just how we get the funds that we need in order to do the work that we do. Alden Blevins: And just kind of practically, what are the steps in an appropriations process or what can people kind of expect out of appropriation season? Oh Stephanie Flynt…: Oh my goodness. Okay, so usually, [00:05:00] of course in the spring, we usually see a big influx of appropriations forms, which, we’re starting to kind of see that now with the House setting their committee deadlines for appropriations, so we’re starting to kind of see an influx of that now. In the Senate, we’ll probably see that a little bit later on as that comes down. But usually the offices will set their personal deadlines, their committee deadlines. And then the appropriations bills, just kind of depending on where they sit, which, all of ours sit on the subcommittee for Labor, [00:05:30] Health and Human Services, Education and related agencies on both the House and the Senate side on the Appropriations Committee. And so there will be a House markup usually around June, as well as a Senate markup in July with the hope that we are able to go ahead and pass the appropriations, the funding that we need for the next fiscal year that starts on October 1st. Alden Blevins: My next one is just why do you guys think advocacy on Capitol Hill matters [00:06:00] during appropriation season? The regular person might not realize how important this is and why. Stephanie Flynt…: Yeah. In my experience, like you said, Alden, a lot of people don’t realize how important and how crucial that kind of advocacy is. But really and truly, that kind of advocacy is what helps us acquire our funding for services, particularly advocacy. So it’s definitely super important to be continuing to follow up with your members. Of course, meeting with your members if you can, [00:06:30] and their staff. Having a steady contact in their offices, things like that. And even just building those relationships in my viewpoint is a good form of advocacy and just making sure that they know who you are, they know what your programs do. They know how it benefits folks in their state/district, et cetera, et cetera, the constituency that they serve. So just making sure that, those points. Eric Buehlmann: And the specific, the biggest requirement is staff [00:07:00] are always seeking information. You’re covering hundreds of programs, multiple issues. They don’t know everything that is going on. They can’t track everything at the same time because they just have information overload. So putting a face with a person, with the story, with the request in front of them makes the biggest difference, because then the staff begins to know who you are. But otherwise, they’re just overloaded with how much material they’re trying to cover and how much stuff they’re trying to do. And if you’re not in front of them, I mean, as [00:07:30] it’s basically said, if you’re not talking to them, you’re on the menu, you’re not the one that’s providing them the information. Stephanie Flynt…: You’re not at the table, you’re on the menu, yeah. Alden Blevins: That makes a lot of sense to me. I was also just going to ask, we’re all so excited and grateful that we were level funded for FY26, but what does level funding really mean? What has that looked like over the last couple years? And having that level or that stagnant funding, what does that mean in terms of the [00:08:00] P&A’s services or the take home impact? Eric Buehlmann: It’s difficult for the P&As because level funding really is in a way, a kind of a cut. Costs are going up continually, healthcare costs are going up. Cost of travel, cost of everything is going up. So level funding ultimately means that they’re able to do less or they may need to shift from doing as much individual case work to more systemic work where you’re helping multiple people by solving one problem. [00:08:30] So level funding is great, especially when you’re facing the potential of cuts. But ultimately if you do that for many, many years, it ultimately means that the P&As and the CAPs will have less staff and able to serve less people. Alden Blevins: Now that we’ve kind of grounded ourselves in a little bit of how this process works, we’re going to talk about the larger policy landscape that we’re all living in right now. What are some of the disability policy concerns we saw come to a head in 2025 and how do we think [00:09:00] that might influence our policy landscape for the rest of 2026? Stephanie Flynt…: Oh my goodness. Do you want to start or do you want me to? Eric Buehlmann: You go first. Stephanie Flynt…: Oh, goodness. I think for me, the biggest thing that comes to mind is the dismantling of the Department of Education. We’ve definitely seen different things that have kind of gone ahead in that regard. And so obviously, there’s a lot of different concerns that are there in those types of things. And so [00:09:30] just continuing to monitor that and what all of that looks like. Of course, I’ll leave a little bit of the healthcare stuff to Eric since that’s more of his specialty, but of course, that is something that I would be remiss not to mention. The various concerns around the Medicaid work requirements that will be taking effect and how that’s going to impact our community. So there are definitely a lot of different policies and a lot of different things that you don’t think about necessarily intersecting with [00:10:00] the disability community, but that are still having impacts on the disability community, particularly those who are members of multiple marginalized communities. Eric Buehlmann: I think building on that for Stephanie is, it’s not just the Medicaid work requirements that are going to hit people. It’s just the massive amounts of cuts to the amount of funding that the states are getting. It’s sort of a partnership between states and the federal government. And if the federal government cuts their share of funding, it means states are going to be cutting their share of funding. And what those cuts [00:10:30] really mean in the long run is that unfortunately, not required services or waiver services are going to be the ones that are going to get hit. If they have to do it, the state will pay for it. If they don’t have to do it and the state’s not willing to put up the money, then those services are going to go away. And in our case, that means home and community-based services for the most part. So not only are a number of people going to get kicked off of Medicaid because they’re having problems following the work requirements or understanding [00:11:00] what the work requirements are and/or having to go through getting re-certified every six months rather than every year, that’s going to mean more people are going to be kicked off. On top of it, you add in all the cuts and the states are going to look around and say, “Well, we’re losing $1 billion,” let’s say, in California, I think is the number they said. “How are we going to make up that gap?” And what they’re going to do is they’re going to say, “Well, these are required and required in the Medicaid program is institutionalized care versus [00:11:30] the ones that we choose to do on our own, which is home and community-based services. Well, if we have to do it, we’ll have to pay for it.” And that means there’s a gap and that gap is going to come out of home and community-based services. Alden Blevins: Yeah. And I think this is kind of a great connection to that home and community-based services piece. I was going to kind of ask, generally speaking, what themes might we be seeing in Congress right now that could affect P&A programs or disability justice as a whole? Eric Buehlmann: I do think one issue [00:12:00] that we’re encountering is more and more members that may not understand disability as well, or what the desires of people with disabilities are, and may listen to not just the person with a disability, they may be listening to their guardians or they may be listening to their parents. Not saying that they don’t know what the person with a disability wants, but if you want to go to the source, the source is the person with a disability. So I think one of the themes, and I think this is why it’s critically important for people with disabilities to be involved in these discussions and [00:12:30] doing this advocacy, is you’ve got to put yourself front and center. And you have to say, “This is what I desire, this is what I want. I want to live in the community, I want to live at home. I want to be able to work in an integrated environment. I don’t want to be paid subminimum wage.” And if they’re not hearing from people with disabilities about that, then that’s a problem. And I think what we’re seeing is sort of a return to sort of the old way of thinking, sort of pre-IDEA, pre-ADA. And people with disabilities should be [00:13:00] off to the side and not at the forefront. And so I think that theme is carrying over in a lot of the ways Congress and the administration are looking at these issues. And I think in terms of other themes, it’s, “We got to save money somewhere.” And their ideas of trying to save money is to cut programs, which actually in the long run, costs more. It costs more to be served in an institution than it costs to live and get served in the community. And [00:13:30] so we’ve really got to be making those cases. I think those are two themes that I’m thinking of. Stephanie Flynt…: Yeah, for sure. And I think that another theme really is just broader justice in the civil rights community, just not completely and fully understanding disability. And so I definitely think that if we’re not careful with everything going on, we definitely could regress back a little bit more into the medical model as opposed to the social model. And I think that some of the demonstration in the legislation [00:14:00] that could potentially be introduced, and of course that we are closely monitoring and making sure that we’re continually keeping an eye out. And of course, we’ll keep folks in the network apprised of those things. But all that to say, I think that’s kind of a demonstrated action when it comes to their understanding of what disability is. Alden Blevins: I love what you guys said, especially about people with disabilities being front and center and telling their own stories and determining, [00:14:30] telling the world what they really want and seek out in their lives. I think that that’s so important for people with disabilities to be in the driver’s seat. For those of you who don’t know, we do have a saying in the disability community that is, “Nothing about us without us.” So kind of speaking about some of the messages that have been happening in the last year, we know that a lot of things have become very polarized throughout the last year, 2025. What opportunities do you guys see for collaboration towards [00:15:00] a better future for people with disabilities? What efforts might be a good target for bipartisan support? Stephanie Flynt…: Yeah. I think for me, definitely always on the hunt for bipartisan opportunity. Because the truth of the matter is that disability, even though it is being portrayed as a partisan issue, it’s not a partisan issue. It’s a nonpartisan issue. And so just kind of keeping that in mind as we continue to do this policy work. I think [00:15:30] what it boils down to really, at least a part of it, is messaging. Because looking at the issues that are in the disability community, because they’re nonpartisan, I think that really, it comes down to it’s not about what you’re saying, it’s how you’re saying, it’s how you’re presenting it. When we’re talking to different offices, we want to emphasize different things that they are most concerned about or that may matter most to their particular constituency or the folks [00:16:00] with disabilities that they may serve. Those would be my things, but I definitely, even though it can be challenging at times, definitely just continuing to keep hope there. Eric Buehlmann: I mean, there’s always a lot of different things. And as Stephanie said, you have to sort of tailor your message around what people are interested in. I mean, things like the Transformation to Competitive Integrated Employment Act, I think there’s a large number of people, and we’ve seen it in the states, they’re phasing out the subminimum wage, even in some [00:16:30] very conservative states. And so that’s something that’s garnered bipartisan support, that people should be paid at least the minimum wage for the work they’re doing. And that they should be integrated into the employment environment and not just in segregated workshops. We were able to get a Republican co-sponsor for the Keeping All Students Safe Act this year, which would place some kind of federal restrictions on the use of restraint and seclusion in schools and provide money for [00:17:00] training, which is critically important so that the teachers know and the school personnel know what they do when they’re encountering tough situations. There’s a number of bills. I mean, ultimately disability is very bipartisan and it impacts everybody. So usually whether you’re a Republican, a Democrat or Independent, you either have a family member or know someone very close to you that has a disability. So you just got to frame the message right. Alden Blevins: I love that you guys both mentioned messaging and disability [00:17:30] being affecting everyone. That’s part of my core messaging that I always try to put out there, is that disability can come for anybody. You can be a person who has no disabilities one morning and your situation could be different by that evening, depending on what happens to you in your life. And even as you age throughout the lifespan, most of us are going to experience some degree of disability in our lives. So advocating for this [00:18:00] community now when you have the chance to is only going to benefit you when you inevitably become a part of it. I think that’s really important to remember. My kind of last question on this topic is just, what do you think you would want policymakers today to know most about our programs at the P&As? Stephanie Flynt…: I’m going to yield to the executive overseer to start. Eric Buehlmann: I mean

On this episode of National Disability Radio , we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking. Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up. From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes. Transcript: Alden Blevins: It’s Lachi? I feel very- Lachi: Lachi like Versace. Alden Blevins: Lachi like… Oh, I love that. Michelle Bishop: That is the best way to explain it. Lachi: I mean, but you know what I’m saying? Come on. Alden Blevins: Well, we’re really excited about having you today because we’re all music lovers in this group here. Michelle Bishop: Yes. Alden Blevins: We talk about music all the time. Michelle Bishop: So much. Lachi: Good, good, good, good, good, good, good. I’m in the right place. Michelle Bishop: Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst here at NDRN. Alden Blevins: I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think. Michelle Bishop: Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability? Lachi: Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will. Michelle Bishop: All the important points right there. Lachi: All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed. And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk. So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that? But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?” And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking. Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do. Michelle Bishop: Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you? Lachi: Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’re great friends now, but I didn’t know her back then. I had just seen her tagline and it had said, “I’m Molly Burke and I’m a YouTuber who happens to be blind.” And for some reason I was like, “I don’t know if I love the happens to be blind thing.” I was like, “Well, I’m proud of being blind. Blindness is part of my identity. I don’t just happen to be a woman. I don’t just happen to be a Nigerian. I don’t just happen to be all of the things I am.” And so I would go to… I was touring… We’re always touring and every time I tour and do a show, I do a comedic open where I just introduce myself, I do a quick self-description, et cetera. And in my self-description, I would say, and I don’t just happen to be blind. My blindness is part of my identity, has given me all of the opportunities I have, and it’s really made me a deeper blah, blah, blah. It was just too long. So I had punched it up to be, “My name is Lachi like Versace. She, her, I’m a Black woman with cornrows and I identify as blind.” And the interesting thing about that is people took onto it. They were like, “Oh, that’s cool, nice and punchy.” But whenever I would say it in front of a large crowd or like I’ve said it on interviews or during commercials, I would get this weird, I don’t know, pushback of like, you can’t identify as blind. Blindness is an identity. It’s a medical condition. Or they’ll be like, “Do you read braille or not?” Or they’ll be like, “We don’t want people to think trans blindness is a thing where you just have a blind identity.” And then you can be like, “Well, I’m blind today, so that’s my identity.” And I thought that was really fun. I was like, “Look, everybody’s upset. They’re talking about blindness though.” So I really leaned all the way into it. And I have to say, I am super proud of my disability identity. Was it music that brought me there? I think in a sense and in a way, like today I have a few songs, you guys are music lovers, I have a few songs out that really talk about my disability pride. I think that a lot of the times as we navigate the world, masking our disability, masking our chronic condition, our difference or whatever, we end up overcompensating. We end up building up this really, really thick problem solving muscle or this really, really thick how to get around things muscle and we overcompensate. When we’re finally accommodated, when we finally get to a place where we’re accommodated or we have the tools we need, we’re coming in like bulk as hell. We’re coming in with problem solving muscles. We’re coming in with all of these things that we had to build up because of navigating the world differently, because of every day working through this very difficult maze that is living a life unaccommodated, then when we finally are accommodated, then we are killing it and crushing it. And how could you not be proud of that? How can that not give you a sense of pride? So the songs that I would love for you guys to check out that are mine is I have a song called Life on Hard, which has gone viral several times on Instagram. I’m known as an Instagram rapper, which is like, what? Hello, I do disability advocacy. Look at that stuff. But anyway, so I have a song called Life on Hard, which is essentially about just winning the game of life, playing it on the hardest setting out here while people are still trying to consult the manual. I have another song called Professional, which is oftentimes when I walk on the stage, people see the cane and they’re like, “Aw, she’s going to do a song for us. Is this from Make a Wish Foundation?” And then I bust out these raps or I hop on the piano and I go ape on this piano and then they’re like, “Oh, snap. What? Okay.” And I’m like, “Bro, I’m a professional artist. I’m not object for pity to make you feel good because you felt weird on a Monday and you didn’t feel like getting up for work, but it’s like, she could do it. So can I.” I’m like, “No, I can do it. You most likely probably just can’t.” So that’s what that song’s about. And then there’s The Bag, and The Bag is just essentially like, I’ve been told no so much like, “No, you can’t. No, you’re not good enough. No, we don’t want you.” And I’m like, “You know what? Yes, I am good enough and I deserve everything. So I’m going to throw everything I deserve in the bag, which is everything.” I don’t know. I would not be the person I am if I didn’t love all parts of myself. And that includes my disabilities, that includes my neurodivergences and all of the other wacky, weird body jazz that I bring with me everywhere I go. Michelle Bishop: Lachi, can we maybe, do you and I just FaceTime each other every morning and hype each other up? Stephanie Flynt McEben: I was literally about to say the same thing. I would like in on a true call. Michelle Bishop: I don’t know if you know. Actually, I want to say quickly, I know some of those songs actually from social media, but they’re real. They’re so real. So people haven’t heard music, go check it out. I don’t know if you know one of our co-hosts, Stephanie is blind. You’re speaking directly to her soul right now. Stephanie Flynt McEben: I literally just texted them in our podcast group text and I was like, she’s totally speaking to my soul RN, but of course I don’t want to interrupt anything. Michelle Bishop: No, I know you’re dying to talk to her about the book, Stephanie, and take it away. Stephanie Flynt McEben: Yeah, no, absolutely, for sure. And as somebody who is blind and who also identifies as a blind person and definitely does not identify with the medical model of disability, clearly gotten to more of a social model. But yeah, in terms of going through that journey of accepting all of who you are and everything about yourself, for me, I mean, it took a minute, especially when you’re talking about your experiences as a child and I totally feel that. I was that girl playing the harmonica on the jungle gym by herself. Anyway, this is about you. This is not about me, but I’m just saying that I totally relate to you on a spiritual level. And given that, I would love to know, were there any particular moments when it came to writing the book that were particularly hard or healing? Because I mean, I think that we all know that it’s not always a linear journey. Some days are going to be harder than others. And so would love to get your perspective on that. And I think that our listeners would be interested. Lachi: Yeah, absolutely. The journey for me has been one of constantly unwrapping this amazing gift. I always try to use that as the visual, if you will, of you have this big present and you get to unwrap it and then you just keep getting something cooler inside and then you get to unwrap that and you get something cooler inside and you just keep unwrapping this beautiful gift that is yourself. But you don’t realize that when you first get the box, the amazing stuff that’s going on inside, and it takes time to get to it. So a lot of times growing up, I would kick myself in the butt of, I wish I had come to this when I was so much younger. I wish there were people out there when I was younger, role models that I could look up to when I was eight years old and pointing on the TV and saying like, “Okay, well, I mean, I understand that Ray Charles existed, but that’s not going to…” Stephanie Flynt McEben: Stevie Wonder is here, Ray Charles is here, but we need more of us. Hello. Lachi: We need more of us. Hello. Exactly. And so this time and place where I am right now is where I needed to be for this to work. So I can’t really kick myself in the butt of like, “I wish I had this. I wish I knew this so much earlier. I would’ve been so much further.” That kind of thing. You have to be where you got to be where you need to be. Even right now, this conversation we’re having right now is going to have been necessary for the next thing that is happening in our lives. And just the other day, I was hanging out with Queen Herby, who’s been one of my favorite more modern rappers. I just did a thing with Apl.de.ap. I have done some stuff with Black Caviar. Folks that I’ve looked up to, I’m having the opportunity to Snoop Dogg. I’m having the opportunity to work with these days because of the fact that I am here at the right time now. So when I was writing my book, we were peeling back all the layers. I’m a generally very positive and energetic, social butterfly type of person today. But it’s interesting, I wasn’t always this person and I had to unpack all the layers to get there. One of the biggest things that happens to me, so I’ve always been low vision. So I was born with relatively low vision and it stayed the same throughout my teens and early 20s. But one day I woke up and my sight was just gone. Boom. So the interesting thing is anybody listening would be like, “Oh my God, if I woke up and my sight was gone, I would just die or I would not know what to do. My life would be over.” Stephanie Flynt McEben: Yep. Heard that a million times. Yes. Lachi: But for me, it was weird because I was already low vision, so I was going from level one to the underwater level or whatever. So it wasn’t like that life changing of a thing. I was already using screen readers or Zoom text. I was already doing stuff of that nature. So I wake up blind and I’m just like, “Okay, I guess this is it. This is the day that they told me was coming.” What had ended up happening was my corneas had erupted. And so I went to the doctor and he was like, “You’re going to become completely blind. You’re going to go from this much worse vision than you’ve had to complete blindness over the course of time.” So here you go, here’s a coupon. Bye.” or whatever. So I’m like, all right. So I had decided at that moment that I wanted to start a bucket list. So I was like, okay, what are all the things I’ve always wanted to do before completely going completely blind? So I was like, let me go skydiving, let me go spolunking, let me go meet with people, meet with celebrities and just do all of the things I’ve always wanted to do before I lose my vision. So I went out and I did it. This is still me doing it. This is still me doing it. And so I say that because to people who say if I ever

On this episode of National Disability Radio , we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking. Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up. From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes. Transcript: Alden Blevins: It’s Lachi? I feel very- Lachi: Lachi like Versace. Alden Blevins: Lachi like… Oh, I love that. Michelle Bishop: That is the best way to explain it. Lachi: I mean, but you know what I’m saying? Come on. Alden Blevins: Well, we’re really excited about having you today because we’re all music lovers in this group here. Michelle Bishop: Yes. Alden Blevins: We talk about music all the time. Michelle Bishop: So much. Lachi: Good, good, good, good, good, good, good. I’m in the right place. Michelle Bishop: Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst here at NDRN. Alden Blevins: I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think. Michelle Bishop: Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability? Lachi: Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will. Michelle Bishop: All the important points right there. Lachi: All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed. And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk. So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that? But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?” And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking. Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do. Michelle Bishop: Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you? Lachi: Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’re great friends now, but I didn’t know her back then. I had just seen her tagline and it had said, “I’m Molly Burke and I’m a YouTuber who happens to be blind.” And for some reason I was like, “I don’t know if I love the happens to be blind thing.” I was like, “Well, I’m proud of being blind. Blindness is part of my identity. I don’t just happen to be a woman. I don’t just happen to be a Nigerian. I don’t just happen to be all of the things I am.” And so I would go to… I was touring… We’re always touring and every time I tour and do a show, I do a comedic open where I just introduce myself, I do a quick self-description, et cetera. And in my self-description, I would say, and I don’t just happen to be blind. My blindness is part of my identity, has given me all of the opportunities I have, and it’s really made me a deeper blah, blah, blah. It was just too long. So I had punched it up to be, “My name is Lachi like Versace. She, her, I’m a Black woman with cornrows and I identify as blind.” And the interesting thing about that is people took onto it. They were like, “Oh, that’s cool, nice and punchy.” But whenever I would say it in front of a large crowd or like I’ve said it on interviews or during commercials, I would get this weird, I don’t know, pushback of like, you can’t identify as blind. Blindness is an identity. It’s a medical condition. Or they’ll be like, “Do you read braille or not?” Or they’ll be like, “We don’t want people to think trans blindness is a thing where you just have a blind identity.” And then you can be like, “Well, I’m blind today, so that’s my identity.” And I thought that was really fun. I was like, “Look, everybody’s upset. They’re talking about blindness though.” So I really leaned all the way into it. And I have to say, I am super proud of my disability identity. Was it music that brought me there? I think in a sense and in a way, like today I have a few songs, you guys are music lovers, I have a few songs out that really talk about my disability pride. I think that a lot of the times as we navigate the world, masking our disability, masking our chronic condition, our difference or whatever, we end up overcompensating. We end up building up this really, really thick problem solving muscle or this really, really thick how to get around things muscle and we overcompensate. When we’re finally accommodated, when we finally get to a place where we’re accommodated or we have the tools we need, we’re coming in like bulk as hell. We’re coming in with problem solving muscles. We’re coming in with all of these things that we had to build up because of navigating the world differently, because of every day working through this very difficult maze that is living a life unaccommodated, then when we finally are accommodated, then we are killing it and crushing it. And how could you not be proud of that? How can that not give you a sense of pride? So the songs that I would love for you guys to check out that are mine is I have a song called Life on Hard, which has gone viral several times on Instagram. I’m known as an Instagram rapper, which is like, what? Hello, I do disability advocacy. Look at that stuff. But anyway, so I have a song called Life on Hard, which is essentially about just winning the game of life, playing it on the hardest setting out here while people are still trying to consult the manual. I have another song called Professional, which is oftentimes when I walk on the stage, people see the cane and they’re like, “Aw, she’s going to do a song for us. Is this from Make a Wish Foundation?” And then I bust out these raps or I hop on the piano and I go ape on this piano and then they’re like, “Oh, snap. What? Okay.” And I’m like, “Bro, I’m a professional artist. I’m not object for pity to make you feel good because you felt weird on a Monday and you didn’t feel like getting up for work, but it’s like, she could do it. So can I.” I’m like, “No, I can do it. You most likely probably just can’t.” So that’s what that song’s about. And then there’s The Bag, and The Bag is just essentially like, I’ve been told no so much like, “No, you can’t. No, you’re not good enough. No, we don’t want you.” And I’m like, “You know what? Yes, I am good enough and I deserve everything. So I’m going to throw everything I deserve in the bag, which is everything.” I don’t know. I would not be the person I am if I didn’t love all parts of myself. And that includes my disabilities, that includes my neurodivergences and all of the other wacky, weird body jazz that I bring with me everywhere I go. Michelle Bishop: Lachi, can we maybe, do you and I just FaceTime each other every morning and hype each other up? Stephanie Flynt McEben: I was literally about to say the same thing. I would like in on a true call. Michelle Bishop: I don’t know if you know. Actually, I want to say quickly, I know some of those songs actually from social media, but they’re real. They’re so real. So people haven’t heard music, go check it out. I don’t know if you know one of our co-hosts, Stephanie is blind. You’re speaking directly to her soul right now. Stephanie Flynt McEben: I literally just texted them in our podcast group text and I was like, she’s totally speaking to my soul RN, but of course I don’t want to interrupt anything. Michelle Bishop: No, I know you’re dying to talk to her about the book, Stephanie, and take it away. Stephanie Flynt McEben: Yeah, no, absolutely, for sure. And as somebody who is blind and who also identifies as a blind person and definitely does not identify with the medical model of disability, clearly gotten to more of a social model. But yeah, in terms of going through that journey of accepting all of who you are and everything about yourself, for me, I mean, it took a minute, especially when you’re talking about your experiences as a child and I totally feel that. I was that girl playing the harmonica on the jungle gym by herself. Anyway, this is about you. This is not about me, but I’m just saying that I totally relate to you on a spiritual level. And given that, I would love to know, were there any particular moments when it came to writing the book that were particularly hard or healing? Because I mean, I think that we all know that it’s not always a linear journey. Some days are going to be harder than others. And so would love to get your perspective on that. And I think that our listeners would be interested. Lachi: Yeah, absolutely. The journey for me has been one of constantly unwrapping this amazing gift. I always try to use that as the visual, if you will, of you have this big present and you get to unwrap it and then you just keep getting something cooler inside and then you get to unwrap that and you get something cooler inside and you just keep unwrapping this beautiful gift that is yourself. But you don’t realize that when you first get the box, the amazing stuff that’s going on inside, and it takes time to get to it. So a lot of times growing up, I would kick myself in the butt of, I wish I had come to this when I was so much younger. I wish there were people out there when I was younger, role models that I could look up to when I was eight years old and pointing on the TV and saying like, “Okay, well, I mean, I understand that Ray Charles existed, but that’s not going to…” Stephanie Flynt McEben: Stevie Wonder is here, Ray Charles is here, but we need more of us. Hello. Lachi: We need more of us. Hello. Exactly. And so this time and place where I am right now is where I needed to be for this to work. So I can’t really kick myself in the butt of like, “I wish I had this. I wish I knew this so much earlier. I would’ve been so much further.” That kind of thing. You have to be where you got to be where you need to be. Even right now, this conversation we’re having right now is going to have been necessary for the next thing that is happening in our lives. And just the other day, I was hanging out with Queen Herby, who’s been one of my favorite more modern rappers. I just did a thing with Apl.de.ap. I have done some stuff with Black Caviar. Folks that I’ve looked up to, I’m having the opportunity to Snoop Dogg. I’m having the opportunity to work with these days because of the fact that I am here at the right time now. So when I was writing my book, we were peeling back all the layers. I’m a generally very positive and energetic, social butterfly type of person today. But it’s interesting, I wasn’t always this person and I had to unpack all the layers to get there. One of the biggest things that happens to me, so I’ve always been low vision. So I was born with relatively low vision and it stayed the same throughout my teens and early 20s. But one day I woke up and my sight was just gone. Boom. So the interesting thing is anybody listening would be like, “Oh my God, if I woke up and my sight was gone, I would just die or I would not know what to do. My life would be over.” Stephanie Flynt McEben: Yep. Heard that a million times. Yes. Lachi: But for me, it was weird because I was already low vision, so I was going from level one to the underwater level or whatever. So it wasn’t like that life changing of a thing. I was already using screen readers or Zoom text. I was already doing stuff of that nature. So I wake up blind and I’m just like, “Okay, I guess this is it. This is the day that they told me was coming.” What had ended up happening was my corneas had erupted. And so I went to the doctor and he was like, “You’re going to become completely blind. You’re going to go from this much worse vision than you’ve had to complete blindness over the course of time.” So here you go, here’s a coupon. Bye.” or whatever. So I’m like, all right. So I had decided at that moment that I wanted to start a bucket list. So I was like, okay, what are all the things I’ve always wanted to do before completely going completely blind? So I was like, let me go skydiving, let me go spolunking, let me go meet with people, meet with celebrities and just do all of the things I’ve always wanted to do before I lose my vision. So I went out and I did it. This is still me doing it. This is still me doing it. And so I say that because to people who say if I ever

Alden Blevins, the newest host of National Disability Radio, has a personal journey with autism and ADHD that has shaped her perspective on disability rights and advocacy. Alden was misdiagnosed with anxiety and depression as a child, and did not receive the correct diagnosis of autism and ADHD until her late 20s. Alden describes her experience navigating the workplace and healthcare systems as an autistic individual, emphasizing the challenges of "passing" as neurotypical and the importance of self-accommodating.

Jack is going off to law school. So the gang sits down to reminisce on his time at NDRN, share a few stories from behind the scenes, and hear a joke from Stephanie that gets a good laugh out of us. Full transcript available at: https://www.ndrn.org/resource/ndr-august25/ Jack Rosen: Like we have any sort of agenda for today, so just sort of going to get what I get. Turn that into a podcast, I guess. Stephanie Flynt McEben: Sure. Michelle Bishop: And that’s different from any other episode because… Jack Rosen: It’s not, it genuinely, I guess is not, I suppose at some point we’d have a guest and questions we thought we should ask them. Michelle Bishop: Oh. Stephanie Flynt McEben: I’m the guest and I have the questions. I don’t know. Jack Rosen: I’m pretty sure you’re not the guest. Michelle Bishop: It’s fine. Stephanie Flynt McEben: I’m pretty sure Jack is the guest. Jack Rosen: I’m sort of the guest. Stephanie Flynt McEben: What? Michelle Bishop: Wait what? Stephanie Flynt McEben: This episode is for Jack, isn’t it? Jack Rosen: It would be very funny if we just made it the Stephanie episode, even though we’ve done like two of those. Stephanie Flynt McEben: No. That would make me feel like such a bad chicken nugget. Jack Rosen: Even though we’ve already done- Stephanie Flynt McEben: This is all about you. Michelle Bishop: We already did a Stephanie wedding episode. Jack Rosen: We did a whole one about you getting married. Stephanie Flynt McEben: We’ve already done a bunch of episodes about me doing chicken-nuggety things like, come on. Michelle Bishop: Oh, that reminds me. My mom wants to hear about the legally blind Uber driver. Stephanie Flynt McEben: I forgot that I slipped that into an episode. Michelle Bishop: Yeah, she’s still listening and she has some follow-up questions. Stephanie Flynt McEben: I love this. Michelle Bishop: Well pack might have to address that at some point. Jack Rosen: Well, Stephanie, do you want to address it? I mean, let’s give the people what they want, I guess. Stephanie Flynt McEben: Yeah, I guess we can give the people what they want. Michelle Bishop: Yeah, we have one listener, so we should probably follow up on that for her. Stephanie Flynt McEben: Yeah, no, that makes sense. And Carol, thank you so much for being a dedicated, loyal listener to this wonderful podcast. So I will give a slighter Cliff Notes version just so it doesn’t take up the whole hour. So I am waiting for a car outside of, I can’t remember which Metro stop it was, but I had to go get something, and so I just figured I’d take an Uber home from the Metro because that particular Metro was a lot easier to get a car and it would only be a 20-minute ride. Okay, fine. This is what I’ll do. And so I get out of the Metro station, I’m trying to find my driver or whatever, yada, yada, and I can’t even remember his name. Maybe we should just call him Bob for anonymity. I am bad at saying that too. But yeah, so Bob pulls up in some sort of Toyota of some sort and I get in the car and we start driving and I noticed that I’m hearing a lot more horns, but I’m just not thinking about it because it’s rush hour DC traffic. And then we started, he was like, “You know, I’ll be honest with you, I’m legally blind. I can only see out of one eye.” And I was like, “Oh, okay.” And I’m just trying to think of some of the things that he said, but he said different things that were essentially low vision, blind hacks or what have you. I’m trying to remember the specific hacks, but honestly, when he said, “I’m legally blind,” I was kind of like, “Huh, Jesus, take the wheel. Please get me home safe.” So it was a wild ride. No, that was not an intended pun but we can make it a pun. Jack Rosen: So you’re saying he might’ve had limited vision in the one eye? Stephanie Flynt McEben: Yeah, potentially. But, he said that he was only legally blind, he was legally blind or totally blind out of one eye, and then he could see out of the other eye just fine. Jack Rosen: You don’t sound convinced he could see just fine out of the other eye. Stephanie Flynt McEben: I’m not. I don’t want to say it. Jack has to say it. Jack Rosen: I don’t want to say it. Michelle, kick us off as always. Stephanie Flynt McEben: Yeah, Michelle, you do that. Yeah. Michelle Bishop: Why is it always me? Okay. Stephanie Flynt McEben: Because you’re such a good public speaker and I’m really sad right now. Jack Rosen: We’re already dealing with enough change. I don’t want to deal with more. Could you please kick us off? Michelle Bishop: On this very special episode of National Disability Radio, we say goodbye to our pro-host extraordinaire, Jack Rosen, who is leaving NDRN to go to law school. Yay, Jack. We need an applause. We’ve never had an applause. Can we- Stephanie Flynt McEben: I know I keep saying that. Oh my gosh. But seriously, Jack, we’re going to miss you so, so, so much. And you have been an amazing pro-host with the most. Jack Rosen: I also have bad news. I definitely did not have enough time left to add in the applause, but… Stephanie Flynt McEben: Clap, clap, clap, clap, clap, clap clap, there. I’m trying not to, oh man. That made me sound facetious. I might have to- Jack Rosen: No, we’re keeping that in. Michelle Bishop: That’s definitely staying in. The part where Stephanie was very salty with you is definitely staying in. This is still the most professional podcast in the business. Stephanie Flynt McEben: Yes, it is. Michelle Bishop: We pay the big money for the good effects. Stephanie Flynt McEben: Yes. Jack Rosen: But thank you Michelle. I am sad to be leaving NDRN. It’s been five years here. I started back, for those who don’t know, I started back in 2020. It was actually pretty early COVID. It was May the fourth, because I’ll always remember it’s Star Wars Day. Michelle Bishop: Yes. You started- Stephanie Flynt McEben: May the fourth be with you. Jack Rosen: And it’s funny, NDRN was pretty much the last job interview I had at the start of COVID because nowhere else in the world was hiring. And I interviewed with Michelle and David Hutt and our former ED for a position on the voting team, and I told them at the time like, “Hey, my background is really in politics and comms. I’m a person with a disability. I have ADHD. And I’ve received services throughout my life for it, but I don’t know a ton about the disability rights movement, but I’m willing to learn.” And I got lucky enough that they decided to take a chance on me. And so for the first two years I was here, I worked for Michelle helping get out the vote in the role that our friend Monica is in now. Then about three years ago, I switched over to the communications team, and one of my first projects there was that we had this podcast they wanted to restart and for, God, yeah, three years now since, we have been putting this out together, meeting once a month, usually meeting twice a month because we’re disorganized and what we do is create a podcast episode and then every time forget to do the intro and outro to it. A little behind the scenes, we have never recorded one of those in the same time we’ve recorded the interview. Michelle Bishop: They have to know because sometimes one of us just isn’t .there Stephanie Flynt McEben: Or is sick or something. Thank you- Michelle Bishop: For part of the episode, how come Stephanie was in the interview, but she wasn’t there when they did the intro? Stephanie Flynt McEben: Right. They have questions. Michelle Bishop: We’re super good at this. Stephanie Flynt McEben: We have all the questions. We are sorry guys. Sometimes we have migraines, sometimes things happen in life. Michelle Bishop: Also, Stephanie made us start the podcast. Stephanie Flynt McEben: I did not. Michelle Bishop: That was 100% Stephanie. I was the only host that was left, Justice and Erica were already gone. And Stephanie was like, “I want to host a podcast. We need to do this podcast.” And then they were like, “I guess Jack has to do it and produce it.” Stephanie Flynt McEben: So what you’re saying is that I made Jack and you do this against your will. Michelle Bishop: Yes. Stephanie Flynt McEben: No. Jack Rosen: You definitely added a significant chunk of my workload. This is one of my core responsibilities. Stephanie Flynt McEben: I’m sorry. Michelle Bishop: We remember it the same way. It was totally Stephanie. Stephanie Flynt McEben: It was not. Jack Rosen: I kind of think it was you Stephanie. Stephanie Flynt McEben: Lies, slander, blasphemy. Jack Rosen: I know Michelle did not want to start doing this again. Michelle Bishop: Another episode. Stephanie Flynt McEben: I kind of made it worth it with my awesome jokes, right, yeah? Michelle Bishop: Oh, um… Stephanie Flynt McEben: No? Jack Rosen: I’ve enjoyed Michelle’s reaction to them a lot. When did we, now I’m wondering when we started adding the puns. I think it was- Michelle Bishop: From the beginning. Jack Rosen: It wasn’t the first episode. I’m looking right now. It was the second one Stephanie. Stephanie Flynt McEben: It only took me one episode. Jack Rosen: It took you one episode, and then on the third one we added, I believe Stephanie’s iconic sound. Stephanie Flynt McEben: Yes. Michelle Bishop: For Stephanie’s Joke of the Month. Everyone else needs to know what we are living with over here with Stephanie and the puns. Stephanie Flynt McEben: I’m sorry that you guys have been personally victimized by me for almost four years now. Jack Rosen: So yeah, after five years here, I decided it was time to make a little bit of a career change and I decided to go to law school. I decided, I’ll say hopefully a career change, but not necessarily a field change. The law school I picked out is one that has a disability law clinic and a strong focus on public interest. It’s sort of funny. It all comes full circle that I can remember five years ago telling you guys, I don’t know a lot about this, but I’d like the opportunity. And it was something I always vaguely wanted to do, disability rights, but I thought it would be like, oh, after I’ve had a corporate or a politics career, maybe I could give back that way. And even then it was just vaguely I’ll do something to help people with disabilities, it wasn’t, I want to get into legally-based disability advocacy. And five years later I’m like, oh, when I’m looking at these law schools, I need to find one where I can go further in this field and expand my skill set and be able to do more here. So I don’t know, I’m sad to be leaving. I’m also grateful to you, Michelle, because it definitely changed my career trajectory in a way I never expected. And it is bittersweet. But we have shared probably too much of our personal lives on this podcast for three years now. So we figured really no other way to end it than with the podcast. Michelle Bishop: And we are three of the least interesting people. Stephanie Flynt McEben: Hey, rude. Everybody thinks I’m interesting. Michelle Bishop: No, Jack, we’re going to miss you. Stephanie Flynt McEben: Yeah we are. Michelle Bishop: It has been a pleasure to work with you all this time. I’m glad we converted you into a full-blown lifelong disability rights advocate. Stephanie Flynt McEben: Yes. Michelle Bishop: [inaudible 00:10:09] on you when you were young, scrappy and hungry. Stephanie Flynt McEben: We did not throw away our shot as NDRN. Michelle Bishop: I’m going to quote Hamilton in this episode until we get sued because we have to get sued at least once. Stephanie Flynt McEben: We have to get sued for Jack’s last episode. Michelle Bishop: We have to get sued at least once before Jack leaves. Stephanie Flynt McEben: Lawsuit, lawsuit. Jack Rosen: It’s been my entire goal while producing this podcast has been to get us sued. I’ve tried by- Michelle Bishop: We’ve tried everything. How many copyrights can we violate? Jack Rosen: We’ve tried to get Taylor to sue us. We’ve tried to get the cast of Hamilton. We didn’t do Disney. We’re scared of them. Stephanie Flynt McEben: I thought we did do Disney. Remember, we sang Let It Go? Michelle Bishop: We sang Let It Go? Jack Rosen: You know what, yes, we did do Disney. Michelle Bishop: I thought Jay-Z was going to sue us when I didn’t put him in my Top Five on the live episode. Stephanie Flynt McEben: Oh, on the live episode. I was like, wait, is going, how is Mississippi, Michelle? Michelle Bishop: It’s raining. Stephanie Flynt McEben: The rain in Mississippi is annoying. It’s like extra humid. Michelle Bishop: Totally. All the time. Oh yeah. It’s humid. I’m not built for this. Stephanie Flynt McEben: No, it’s extra humid. Michelle Bishop: It’s stormy. The whole time. So I haven’t really gotten to see the glory of your home state. Stephanie Flynt McEben: Oh, so sad. Yeah. Nope. You got to go to Keefer’s and Bulldog. Michelle Bishop: Okay, I’ll work on that. Jack Rosen: What is Bulldog? Stephanie Flynt McEben: But Jack, seriously, we are very much going to miss you, and I just can’t thank you enough for being such a good coworker, colleague, friend, and confidant during my time at NDRN. And I know that you won’t be far, but yeah, it’s been amazing working with you. Whether we’re coming up with tweets or I’m bothering you with puns or all that good stuff. Oh, or that one thing that happened last year at annual conference], the getting kicked out of the bar thing, which probably should be. Michelle Bishop: That’s why- Jack Rosen: In our defense, and we’re not going to say which bar, they were being kind of ableist. Stephanie Flynt McEben: They were totally being ableist. Jack Rosen: Can we tell the story on the pod? Michelle Bishop: Don’t name the bar. That’s definitely how- Jack Rosen: We’re not going to name the bar. Stephanie Flynt McEben: Is it bad that I can’t even remember what the name of that bar was? Michelle Bishop: Where was I even when this was happening? Jack Rosen: I think you must have been asleep. Wait, we can’t say where we were either, Stephanie. Michelle Bishop: Did you just call me old in the middle of a podcast episode. Where was I when you guys were at the bar? Stephanie Flynt McEben: Asleep, Michelle, you’re ancient. Jack Rosen: You were invited. Yeah, but I think we were there at like 11:30 at night. Michelle Bishop: Okay. That’s worse. Could you tell people it was like 2:00 A.M. or something? Jack Rosen: Yeah. Stephanie and I were out, we were at the club. It was 3:00 A.M. Stephanie Flynt McEben: Everybody in the club getting, okay, I’m done. Anyway, it was 3:00 A.M. We were at the club in Nowhereville. Michelle Bishop: It’s 11:30, you know your Gen X bedtime does not allow you to be up past 10:00. Stephanie Flynt McEben: Low key. I go to bed at nine o’clock on the rag. Michelle Bishop: We need older people on this podcast. Stephanie Flynt McEben: Oh, come on. I go to bed at nine o’clock. I’m basically an oldish person now. Jack Rosen: I’m pretty sure your new producer is going to be my age, I’m pretty sure. Michelle Bishop: But if we’re getting the producer, I think we’re getting, she is a Swifty, so now it’s just going to be an all Swifty crew. So we look forward to the next episode of this podcast where it’s all about people with disabilities who love Taylor Swift. Jack Rosen: I may have warned her when I was telling her how to produce the podcast. I’m like, so for the first 20 minutes they usually talk about Taylor and then I turn the recording on after, so I don’t have to go through all of that because eventually we’ll just get to the podcast. But you got to let them go through talking about Taylor Swift first. Stephanie Flynt McEben: << Don’t say that I didn’t warn you >> Michelle Bishop: Nice. Stephanie Flynt McEben: I’m over here- Michelle Bishop: You don’t need to hear all my theories about when Rep TV was going to be dropped since it’s apparently never coming. So that’s fine. I have a little embarrassment. Jack Rosen: You have been predicting it for years. Michelle Bishop: I mean, some of the evidence was convincing, okay. Never mind. It’s fine. It’s fine. It’s fine. Jack Rosen: Is she not now that she owns her catalog? I thought she would anyway. Michelle Bishop: She never actually recorded it, so… Jack Rosen: Really? Michelle Bishop: Yeah, she’s only recorded like a quarter of it, so I’m thinking it’s a no. There’s going to be Vault Tracks though, Stephanie Vault Tracks. We still have things to look forward to. Stephanie Flynt McEben: I love the Vault Tracks, honestly. Michelle Bishop: Right? Stephanie Flynt McEben: Nothing New is like my jam. Michelle Bishop: You know I saw that Live with Phoebe Bridgers. Stephanie Flynt McEben: I am- Michelle Bishop: Oh, this is already transitioning into a Taylor Swift podcast and Jack is still here. Stephanie Flynt McEben: Right? God bless it. I’m still so jealous that you got to see Phoebe and Taylor and you got to see Taylor three times. Michelle Bishop: Okay. Jack Antonoff also came out that night and Ice Spice. Anyway. Stephanie Flynt McEben: Hair flip. Michelle Bishop: We should probably talk about Jack or at least disability rights or something. Jack Rosen: At least the podcast, maybe? Michelle Bishop: The podcast. Stephanie Flynt McEben: No. Let’s talk about Jack. This is the Jack episode. Jack Rosen: Okay. I guess we’ll do a couple stories from my time at NDRN. Michelle Bishop: Yeah, we need your favorite stories from your time at NDRN. Yes. Stephanie Flynt McEben: Don’t let either of us jack the episode from you. Michelle Bishop: Nothing illegal. Jack Rosen: Oh, come on Stephanie, that one was lazy. Michelle Bishop: Stephanie, did you really just say that? Jack Rosen: I have heard that- Stephanie Flynt McEben: Don’t let any of us jack the, oh, come on. That was fun. Jack Rosen: Not giving you that one. Michelle Bishop: I don’t don’t know if I’m disappointed or proud of that one. Stephanie Flynt McEben: You should be disproud-pointed. Michelle Bishop: It’s like 50/50. Anyway Jack, no illegal stories, please. Jack Rosen: No. Stephanie Flynt McEben: We don’t want to get sued for that reason. Jack Rosen: Okay. Michelle Bishop: Yeah, there’s certain things we want to be sued for and certain things we should avoid. Stephanie Flynt McEben: What are some of the funniest stories from your time at NDRN? Jack Rosen: Let’s think. I mean, yeah, as we alluded to, there was the time, Stephanie and I, at one of our annual conferences, we were out at an undisclosed location. It was very late. Michelle was in fact there earlier partying it up, but then she was like, “Hey, it’s 3:45 A.M. I got to get out of here before sunrise.” Michelle Bishop: Thank you. Jack Rosen: Yes. But no, they double charged Stephanie at this bar. They were claiming the credit card transaction wouldn’t go through, it was bad. They just kept trying to talk to me and show me the receipt and I’m like, A, I’m not dealing with this. You guys figure it out, and B, you are just being wildly ableist to us right now. Stephanie Flynt McEben: So ridiculous. Jack Rosen: But let’s see, what else? That one was wild just because I did not ever think in my years of working here, I would be not quite asked to leave, but certainly not asked to come back. Michelle Bishop: You did also ride in a self-driving car. Jack Rosen: We did- Stephanie Flynt McEben: Oh yeah. Jack Rosen: We did record an episode from a self-driving car. That was when Raquel was on the pod. It was me, her and Marcia. Stephanie Flynt McEben: I think I was also leaving a bar if I’m correct. Jack Rosen: That one was. That was after when we all went out to a Mexican restaurant at the Phoenix conference and Marcia just, we ordered it and Marcia just sort of volunteered. She’s like, “Okay, I wanna come along and see this.” I’m like, “Okay, but you’re on the podcast.” Stephanie Flynt McEben: That is the trade-off. Jack Rosen: Yes. Michelle Bishop: I also wasn’t there. I’m never there when these things happen. Jack Rosen: I don’t know why you were

We wrap up our series on the battle for the passage of the ADA with none other than Senator Tom Harkin. Senator Harkin was the lead sponsor of the ADA in the Senate and has spent his career being a steadfast ally to the disability community. In this interview we talk to him about what that was like, where we need to go from here, and he even stumps us with a bit of disability rights trivia. Full transcript available at: https://www.ndrn.org/resource/ndr-harkin/ Michelle Bishop: Welcome back to another episode of National Disability Radio. This is the final in our series on the anniversary of the ADA. So before we jump into a very special guest that we have for you this episode, I am one of your podcast hosts, Michelle Bishop, the voter access and engagement manager at NDRN. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst here at NDRN, and another host, or one of our other hosts, for our podcast today. Michelle Bishop: Okay. Clearly taking his side, Stephanie. Clearly taking his side. Stephanie Flynt McEben: Okay. Okay. But Jack has proven that he is worthy of host, Michelle Bishop: Producer and pro host extraordinaire, please introduce yourself. Jack Rosen: Thank you, Stephanie. I appreciate the support. Hi, producer and host, Jack Rosen, here. Really excited about today’s episode. This guest has been at the top of our wish list for a while now, and we are so thrilled to have him on. So I suppose we want to just get into it. Michelle, why don’t you tell the folks that we have on today? Michelle Bishop: We’re really excited today to be talking to the honorable Senator Tom Harkin, who was so instrumental in so much of the early disability rights movement and passage of the ADA. In 1974, Tom Harkin was elected to Congress from Iowa’s 5th Congressional District. In 1984, after serving 10 years in the US House of Representatives, Senator Harkin was elected to the Senate and reelected in 1990, 1996, 2002, and 2008. He retired from the US Senate in January of 2015. I use the term retired loosely. He is still very active in the movement. As a young senator, Tom was tapped by Senator Ted Kennedy to craft legislation to protect the civil rights of millions of Americans with physical and mental disabilities. He knew firsthand about the challenges facing people with disabilities from his late brother Frank, who was deaf from an early age. What emerged from that process would later become his signature legislative achievement, the Americans with Disabilities Act. In September 2009, following the death of Senator Ted Kennedy, Senator Harkin became chairman of the Senate Health Education, Labor and Pensions, or as we know it, HELP Committee. Senator Harkin believed that to serve in this capacity was to carry on the legacy which helped lead to the passage of the Affordable Care Act. In 2015, Senator Harkin and Ruth Harkin establish the Harkin Institute for Public Policy and Citizen Engagement at Drake University in Des Moines, Iowa to inform citizens, inspire creative cooperation, and catalyze change on issues of social justice, fairness, and opportunity. The institute works to improve the lives of all Americans by giving policymakers access to high quality information and engaging citizens as active participants in the formation of public policy. Senator Harkin, thank you so much for joining us today. Jack Rosen: So we’re sitting here today with Senator Tom Harkin for our series commemorating the 35th Anniversary of the passage of the ADA. This is Producer Jack Rosen. I am joined by my co-hosts, Michelle Bishop and Stephanie Flynt. And to kick things off, we wanted to ask you, one thing we’ve found when talking to some of the folks who were involved in the passage of the ADA is that they recalled that was quite a fight to get people with HIV, AIDS and mental illness, as well as substance use disorders covered at the time, especially being 1990 and there was a lot of stigmatization of people with HIV, AIDS. Could you talk a little bit about that fight and why it was important for you to make sure those groups were included? Senator Harkin: Well, yes, because we didn’t want to leave any element of a disability group out of the coverage of the bill, want to be comprehensive. You start carving out one group, then there’s somebody else will carve out somebody else and the thing falls apart. The HIV, AIDS thing came up because there was so much misinformation about AIDS and how people got it. And a lot of it, let’s face it, was based on homophobia at that time. And we had some purveyors in the country and in the Senate of that kind of discrimination. Former Senator Jesse Helms of North Carolina is predominant among that. And so they tried to do whatever they could to carve out that portion of our populace. Well, we were successful in the Senate in keeping it out, but the House at the last minute added what was called the Chapman Amendment. Chapman was a congressman from Texas. I think that’s right, from Texas. And at the last minute they added the Chapman Amendment to preclude coverage of the ADA for anybody with HIV or AIDS. It wasn’t just AIDS, it was HIV too, a huge populace. Well, as we pointed out at the time, everyone thought well, you only got HIV if you were practicing unsafe, same-sex. But we knew from medical studies and stuff that that just wasn’t so, it was absolutely not so at all. Well, Chapman Amendment came on at the last minute. Now keep this in mind, it’s a little bit in the weeds here on legislation. But we had passed our bill in September of 1989. It went to the House, got stuck in the House all winter until we had what was called the Capitol Crawl in March. After that, it began to get loosened up and we got it through the House, but not until the last minute the Chapman Amendment was at. And so when we went to conference… Okay, so the Senate had one bill, the House had another bill. When we went to conference, the Senate voted to instruct conferees as did the house, to instruct conferees to accept the Chapman Amendment. Well, of course, I’m the head of the subcommittee. I’m the person leading the charge on this and negotiating with the house. And we met with the disability community. And basically, I’ll tell you, the disability committee held together. They said, “If they’re out, we’re out. We won’t have a bill.” They had worked for so long and so hard to get this done. Well, so here’s what happened. We enlisted a person who had been sort of with us all along, but sort of dragged along kicking and screaming, and that was Senator Orrin Hatch of Utah. And finally, the disability community came to him and some people he knew in Utah and said, “Look, we can’t afford to let this bill die. We got to save this bill.” And so a few people came to meet with Senator Hatch and convinced him to have a substitute for the Chapman Amendment that basically said that in disregard of HIV, AIDS, et cetera, that we would rely upon the latest and best medical and scientific studies and results in order to determine the further course of action. Anyway, it was just… got rid of the Chapman Amendment and substituted this language of we’ll take the latest scientific… And we sold it on that basis. We sold it to the Senate, even though they instructed them to accept the Chapman Amendment. We went back to them and said, “Look, this is a great compromise. Who can argue that we shouldn’t use the best scientific and medical information and data?” And that’s what we did, and that was the end of it. And so then the House went back and they passed it and it came back to the Senate and we substituted our bill, because we had some different things in it. So we took my bill, the bill we’d drafted and made it the final bill and sent it to the White House. That’s a long story, but it was very involved. Michelle Bishop: It’s actually one of my favorite stories, though, I have to say, Senator, about the passage of the ADA. It was such a moment in time and the way that the disability rights community really stood together- Senator Harkin: Yeah, you did. Michelle Bishop: … in a business where it would be very easy to say, “Okay, we’ll cut these folks out and we’ll get this for the rest of us.” The way the community really stood together and the way that you released stood your ground as well for what was right for people with disabilities. Senator Harkin: Well, I’ll tell you a little story that happened before, before the Chapman Amendment, but it was right about that same time. We still had some people in the disability community that were just… They wanted this, they wanted that, and I understood that. So I got Pat Wright and some others too from California. Who am I thinking of? I just lost the name in my… Anyway, Pat Wright was there from Oakland. Who am I thinking of? The Ed Roberts Center? Michelle Bishop: Yes. It’s actually the original independent living center in Berkeley, the Ed Roberts and the Rolling Quads and… Senator Harkin: What’s it called? It was called… There’s just been a disconnect between my brain and my vocal cords. Michelle Bishop: Sir, that happens to me frequently. Stephanie Flynt McEben: Yeah, same. Senator Harkin: Okay, back up. So Pat Wright, who had been with us from the very beginning, fighting for this from the outside, so I got Pat and I said, “Look, bring together as many in the disability community you can, and we’re going to meet in that big hearing room in the Dirksen building that I had jurisdiction over.” And it was like five o’clock in the afternoon and it was packed. Everyone was there. National Federation of the Blind, National Association of the Deaf, Cerebral Palsy, on and on and on and on and on and on. They were all there. And I had Bobby Silverstein with me. And Bobby was my staff director who really, really probably single-handedly was more responsible for the ADA than any other single person. So I said to Bobby, I said, “Look, get all these people together.” I said, “I’m going to lay the law down to them.” He said, “Okay.” He didn’t really know what I was going to do. So we got all these people in the room and I said, “Look, we’ve been through a long fight. We’ve held together, but there’s some people that are holding out that haven’t quite got on board yet.” I said, “Look, I’m about to bring this bell out on the floor, but,” I said, “I’m not going to do it unless you all agree. Unless everybody here agrees and they’re not going to be sniping in the back about this isn’t in and that is.” I said, “Now look, it’s a little after five o’clock, I have to go attend to something. I’m going to leave Bobby Silverstein here in charge. And I’m going to come back, I’ll be back in about an hour and we’ll see. If you agree on what I’ve just laid out, I’ll be on the floor tomorrow with the bill. If you don’t agree, we’ll all go home and that’s the end of it. So I’ll see you in about an hour.” And I walked out. I left Bobby holding the bag. Stephanie Flynt McEben: Oh my God. Senator Harkin: But he was good. He was great. And so I did. I came back in about an hour and one by one, all these different groups were on board. “No, we’re not going to try to do anything in the back round. Yes, we’re…” And that was it. And then I got to take the bill on the floor. Michelle Bishop: That’s incredible. Well, our thanks to Bobby as well then for that work. Senator Harkin: Right. Michelle Bishop: Before we switched the mic on we were talking about all the unsung heroes of the ADA, and especially the people who do the drafting. Right? Senator Harkin: Yeah. Michelle Bishop: Somebody sits down and writes the language. Senator Harkin: Right. Michelle Bishop: And one of the things that strikes me about the ADA, in addition to being this really powerful moment in time for our movement, is that as folks who work in the disability rights movement now, the ADA itself is such an incredible piece of legislation. It was really built on, in my mind, a very clear record of discrimination against people with disabilities. And the bill itself I think is clear and specific and detailed in what it asks of us. It doesn’t just say, “You can’t discriminate. It has to be accessible.” It tells you what that means. It charges agencies like the Access Board with creating regulations that are incredibly clear. And so for those of us who are doing the work these days, who rely so much on everything that the ADA lays out, and it’s certainly in an era of courts that really maybe look to limit its power somewhat, to me, the clarity and the specificity of the ADA is something that is really unique for a landmark piece of civil rights legislation. And I was wondering if at the time that you were doing this work, did you know how important that was and how unique this bill was? Or what is it to you that makes the ADA stand the test of time? Senator Harkin: Yes, we knew. We knew we were doing something that was both kind of profound, but also that we put in language that we thought would tell the courts what we really wanted to do. And of course, as you know, much of the provisions of the ADA are based on Section 504 of the Rehabilitation Act of 1973. Is that right? Stephanie Flynt McEben: Yes. Senator Harkin: Yes. 1973, right. And so we lifted a lot of language from that. And we had the help of person who had been involved with 504. Well, I’m sorry, I just lost a name. I see him in my mind’s eye. I mean, he’s still alive. I mean like me, we’re old and we can’t remember our names. So he was still there, and he came in and was very helpful on the language and putting it together with Bobby Silverstein, who was my staffer, a lawyer. Heifelblum, another lawyer, she was at Georgetown at the time. Arlene Meyerson, another lawyer out in San Francisco or Oakland there. DREDF, that’s the name of it. The Disability Rights and Education Defense Fund. Michelle Bishop: Yes. Stephanie Flynt McEben: Yes. Senator Harkin: That’s who Pat Wright was with, and that was sort of our organization on the outside. Michelle Bishop: I used to work for Robert Funk, who’s a disability rights attorney back at the time, who was part of the founding of DREDF as well. Yeah. Senator Harkin: But, he was with DREDF. Michelle Bishop: Yeah, yeah. Senator Harkin: So, yes, we knew we wanted to be more specific in the language, and we thought we were pretty specific. Again, we had different people meet with different senators and different staffs. And well, it worked out fine. Now, again, I must tell you that it came to quite a surprise to us in 1999, 9 years later, when the Supreme Court decided those three cases, we call it the Sutton Trilogy. There were three cases that decided in one day that just tore apart the ADA in terms of employment. We were, I thought, quite specific in our findings. I remember I was at the Supreme Court the day they handed down the decision. I was there with Bob Dole, who was also a big supporter of ours and getting the ADA through. And I remember we walked out and met the press, and I remember Bob Dole saying, “Well, they said we didn’t have enough…” I think it was Scalia, maybe I forget who it was, said, well, we didn’t have enough data to support this or something. And Dole said, “Well…” Now again, don’t hold me to this figure. But he said, “We had like 200 specific instances of these violations. Now I wish they had’ve told us do they need 210? Do they need 220?” Stephanie Flynt McEben: 227. Senator Harkin: So he was really poking fun at the Supreme Court. Well, because of that decision, it held up employment. Because the employers really didn’t know what to do and the people with disabilities who wanted to be employed didn’t really know what to do. I can get into that more if you want, but it’s kind of in the weeds. But it had to do with whether you self-identified as someone with a disability. If you did, were you still covered by the ADA? It took us another almost nine years to get it corrected, and we worked through those years. And the second Bush came to office, he didn’t hold us up, but everybody got involved in 9/11 and the war in Iraq, and just one thing after another. But finally in 2008, his last year in office, we got it through, and that was the ADA Act Amendments of 2008, which told the Supreme Court, “Here’s what we meet,” basically. Michelle Bishop: Right. Senator Harkin: And so we redrafted some portions of the ADA to make it quite clear what it is we meant. And since that time, we’ve had a clear course on this whole idea of employment. That’s one of the reasons why employment was set back so far. I mean, we went for… Well, you figure that was 2009, that’d be 19 years? 2008, so 18 years. Am I right? Yes, that’s’ right, 2008. Michelle Bishop: Yes. I had to think about it too. Senator Harkin: So we basically went 18 years without really having a clear delineation and upholding of court decisions on employment. Just held us. We did all right on transportation. We did okay on an independent living with the Olmstead Decision and other things like that, but employment was held up back… And in 18… that was ’08, by the time we got the new rules drafted, you’re talking about 2010. So it set us back about 20 years on employment. Michelle Bishop: I know Stephanie asked something she wants to ask you about, but I got to jump in real quick. I just wanted to say quickly, I’m so glad you mentioned Senator Dole because we often find that really champions of disability rights issues come from both sides of the aisle. Senator Harkin: That’s true. Michelle Bishop: That it’s not so much a partisan issue as it is if you are a person with a disability or you love someone with a disability, you see how it impacts people’s lives and you just get it. Senator Harkin: Right. Michelle Bishop: And that’s been, to me, something that just makes disability rights such a unique space to work in. Senator Harkin: Yeah. Stephanie Flynt McEben: And just to add on to that, disability is the characteristic that affects one in four Americans. And also anyone can become a member of the disability community at any time. It intersects with every single minority group. I know I’m preaching to the choir here, but that’s definitely something. Senator Harkin: Right, yeah. Yes, exactly right. You can become a member of the disability community at any point in time. And as some of us grow older and we can’t hear worth a darn, now we’re finding out that we have to lean on a lot of things for closed captioning and things like that. Stephanie Flynt McEben: Yeah. No, for sure. For sure. Senator Harkin: I have to give you another little bit of a thing. I know you’re talking about the ADA. Michelle Bishop: Yeah. Senator Harkin: Before the ADA passed, I got another bill through. Now people always say I’m the author of the ADA and all that, but I don’t say that. People say that, but I don’t say that. I always say the author of the ADA were the many thousands of people with disabilities that marched, that laid under the wheels of the Greyhound buses, that got arrested and thrown in jail, and then the staff and everybody. Did I have a hand in it? Yeah. I’m the lead sponsor, so I was the person that brought it through legislatively and got it passed. Okay, fine. I accept that. But there was one bill that I was the author of and got it through my committee and got it through the Senate and the House and got it signed by the president, that really changed a lot. And no one knows I ever did it. It was called the Television Decoder and Circuitry Act. I bet you’ve never heard of it? Michelle Bishop: No. Jack Rosen: I don’t think I have. Michelle Bishop: I was like, “He’s not going to stump us. We do this for a living.” Stephanie Flynt McEben: Yes. Michelle Bishop: And then you did. Senator Harkin: You can look it up. I forget the public law number of it. But the Television Decoder and Circuitry Act, I had hearings on it. Here’s what happened. I had a brother who’s deaf, and so I got involved in th

On part two of our series commemorating the fight for the passage of the ADA, we have on long time activist Jim Dickson. Jim talks with us about the challenges they faced in getting the ADA passed, what changes he’d still like to see, and surprises us with a fun story about a former guest and friend of the podcast. Full transcript available at: https://www.ndrn.org/resource/ndr-jim-dickson/ Jack Rosen: You know, Michelle, we feel like this part of your life is more mysterious. What was living in St. Louis like? Okay, started that wrong. I’m trying to just get you to give us some St. Louis trivia. Mysterious was the wrong choice of word there. Michelle Bishop: Mysterious? Is it the biscuit? Jack Rosen: I wanted you to talk about the spaghetti and chili. That’s what I’m trying to get to, and I didn’t know how to get there. Michelle Bishop: I don’t know anything about that. I don’t even know what you’re referring to. I do know there’s definitely fish fries every Friday, and it’s always fried catfish with a side of spaghetti, if that’s what you’re thinking of. And we invented toasted ravioli, and most things that matter, like ice cream cones were invented at the 1904 World’s Fair in St. Louis. And there’s St. Louis-style pizza, but it doesn’t have mozzarella on it. It has Provel cheese, which is I’m pretty sure only exists in St. Louis. And pretty much everyone has some sort of connection to Nelly or Nelly’s mom. That’s about it. Jack Rosen: You know what? I was thinking of Cincinnati. Michelle Bishop: Gotcha. I gave all that, and you were thinking of something from Cincinnati. Stephanie Flynt McEben: Is Cincinnati famous for its pizza? Michelle Bishop: Is Cincinnati famous for- Stephanie Flynt McEben: For anything? No offense to any Cincinnatians. Michelle Bishop: Shout-out to Disability Rights Ohio. We love you. Stephanie Flynt McEben: Yas. Michelle Bishop: Our bad. Our bad. I was just in Cleveland. It was cool. Do you not know Midwestern cities, Jack? Can you not tell them apart? Is it all the same to you once you get past like Buffalo? Jack Rosen: Well, then there’s Los Angeles on the other side of the country. Michelle Bishop: Hi. Welcome back to National Disability Radio. I’m Michelle Bishop, one of your co-hosts and the voter access and engagement manager at NDRN. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst, and also one of your hosts for this wonderful podcast here at NDRN. Michelle Bishop: And then we also have a producer, who’s just a producer. Why don’t you tell them hi, our producer? Jack Rosen: Hi, Jack Rosen here, one third of the podcasting team, as you know, a host. Michelle, do you want to tell the people who we have on today? Michelle Bishop: Yes. This is a continuation of our series on the anniversary of the ADA, and allow me first to say, Go ADA. It’s your birthday. Go ADA. It’s your birthday. Okay. I’ve been wanting to get that out since the last episode for the ADA, so thank you for humoring me. So this episode, we have Jim Dickson. He has over 30 years of experience with nonpartisan voter engagement work, particularly in the disability community. He served as the co-chair of the Civic Engagement and Voting Rights Committee for the National Council on Independent Living. He is a former vice president for organizing and civic engagement at AAPD, the American Association of People with Disabilities, where he led AAPD’s Nonpartisan Disability Vote Project, a coalition of 36 national disability organizations, whose mission was to close the political participation gap for people with disabilities, focusing on nonpartisan voter registration, education and get out the vote. He actually played a central role, along with the leadership conference on Civil and Human Rights, in passing the Help America Vote Act of 2002, and he was part of the leadership team, which passed the National Voter Registration Act, which you probably call Motor Voter. He’s the past chair of the board of advisors of the United States Election Assistance Commission, and prior to joining AAPD, where he was for a long time leading this work, Jim organized the campaign to place a statue of President Roosevelt in his wheelchair at the FDR Memorial and the National Mall in Washington, DC. He has a long history of grassroots organizing with multi-issue organizations all over the country. I know definitely in Rhode Island, Connecticut and also in California, so that covers three states Jack has probably heard of. And with the support of the Sierra Club, he organized the first grassroots congressional mobilization for the environmental movement, which resulted in the passage of the first Clean Air Act. So Jim has a long history of civil rights work and grassroots organizing, but if you know him, you probably know him for his leadership with the disability vote work. That’s how I know Jim, who’s actually been a mentor of mine for a long time. Welcome him to the podcast. Jim Dickson: So Justin Dart really used his appointment to the President’s Committee on Employment of People with Disabilities to lay the groundwork for the ADA. He and Yoshiko, his wife, went around to every state, held a public meeting and prior to going, they sent out emails saying, “Sit down for a few minutes and write down all of the experiences of discrimination that you experienced.” I don’t remember whether he said in the last week or the last month. And then in every state, they held a hearing, and people stood up and said, “I experienced discrimination because I got in an elevator, and there was no braille on the buttons, and I had to go to four floors before I got to the right floor.” That was turned into a report to Congress, and that report was used for Congress to hold hearings. The hearings were fascinating, very important. This whole process, which took years, was really the first time that anything approaching the cross-disability community existed. The blind, we were off doing our stuff. The ARC was doing their stuff. There were a few organizations like Nickel and NDRN who were cross-disability and active in more than one disability silo. But the struggle to pass the ADA really eliminated those silos. And it was really interesting both first for me, because I had never thought that the lack of a braille button in an elevator was an act of discrimination. I just thought it was a pain in the ass. And many of us began, because of the way Justin and Yoshiko framed the discussion, we really began to think for the first time in terms of civil rights, is this a discriminatory structure or situation statement? And some people got that very quickly. But I think for much of the community, not the advocates, not the lobbyists, but for the rank and file, I would say it took a good year for that perception of accesses to civil rights to really be absorbed emotionally and intellectually by much of the rank and file. Simultaneous with Justin and Yoshiko’s going around the country and collecting stories and giving a report, Evan Kemp and his partner played bridge with George Bush and Barbara Bush. They were social peers, class, old aristocratic families. And Evan got, between the shuffling, would talk about discrimination that he felt and experienced. And Evan graduated fourth in his class from Harvard Law, at the time walked with crutches and did not get one single offer from a major law firm to come and go to work, totally because using crutches, he was perceived as somehow less competent. Pat Wright with CCD, Consortium for Citizens with Disabilities, formed a strategy committee. And again, there would be 20 to 30 people at every meeting representing 20 to 30 different organizations, different segments of the community. And in the initial stages, there was a lot of talk about if you weren’t blind, the fact that there wasn’t braille on the buttons or an audio announcement on the elevator never occurred to you. So there was a lot of sharing of this experience and recognition that it was discriminatory and a violation of civil rights. And I can’t emphasize enough that the concept of it being a civil rights violation was just stunning and extremely powerful prior to this whole conversation. Those of us who had jobs, careers, when we faced a barrier, our attitude was, “I got to find a workaround. I got to fix this. I got to find a way for me to operate in light of this barrier.” Very, very few of us talked or thought in terms of this barrier is a violation of my civil rights. So the most exciting thing about the process of passing the ADA was meeting with people with different disabilities, sharing our stories. And while there would be meetings in DC, led by Pat Wright and Curt Decker, the then director of NDRN, was very important in the whole process, there were meetings with members at the grassroots level, in the beginning mostly with the staff and a few places with the members. I won’t go into the lobbying strategy and the fact that the committee, the Congress, divided the bill up and had it heard in four different committees, two in the House, two in the Senate, that required a lot of fancy footwork. What was a very important strategic decisions that, in retrospect some of us regretted that we made, was a decision that we had to exempt the churches because the conversation went something like, “We’re picking a fight with business, we’re picking a fight with state and local governments, with school boards. We can’t fight everybody. Let’s not take the churches on, too.” And that was thought through, essentially agreed to. I was one of the minor voices who said, “Yeah, we should not take the churches on.” In retrospect, I’m not sure that was the right decision, but it was made. I guess I’ll move to the signing. Michelle Bishop: Before you do that, Jim, can I ask you a couple of questions? This is fascinating, like this just has my gears turning. Well, first and foremost, the decision not to take on the churches. And now so many churches are polling places, and you and I spent our whole careers, Jim, being tortured by inaccessible polling places in churches. But I was thinking about, it’s really fascinating to me that a lot of people with disabilities didn’t think of some of those things that had always been a pain in the butt as a violation of your civil rights, and how much that has changed since the ADA has become law. That really that framework for looking at the world is this isn’t just a pain in the butt thing that I have to deal with. This is a violation of my rights. We could’ve have built this differently from the start, and I think that that’s really interesting. Jim Dickson: Yeah, and it was really important. It was an emotion. And I want to emphasize that wasn’t just a change in the way of thinking. It was a change in the way we felt about ourselves. It was a very emotional and, therefore, difficult change. But once people felt “You’re screwing me, and it’s not right, and it’s a violation of my civil rights,” that psychic, emotional, almost spiritual change was really essential to the passage of the ADA. There was lots of fancy lobbying footwork. It was people would list members of Congress, and it was okay because just about every member of Congress, somewhere in their life circle at home, had a relationship with somebody with a disability. And a lot of the lobbying was built around which member has a connection with which part of the disability community, and then getting the grassroots in that state or congressional district to be the ones who went in. So a lot of the initial contacts at the grassroots level wasn’t a broad coalition, though that happened in some places. It was more somebody known to the member where there was a relationship and a conversation about barriers equal civil rights violations. And they were, in general, I sat in on a couple of those conversations and I heard members say, “You know, I never thought of it that way, but I can see that.” Michelle Bishop: I feel like some of that is still so true today. It’s people who have a personal connection to disability who get it. Jim Dickson: Yep. Michelle Bishop: I think that’s really still true of disability champions and the work that we’re doing. But I wanted to ask you about one more thing. This is something I’ve always heard through legend about the fight for the ADA. You talked early on about that kind of breaking down of the divisions and there being like a disability rights movement, a community that’s kind of cross-disability. And I had always heard that it took several years to get the ADA a passed, which is not uncommon, especially for a really big, really important bill. But that there were points in the negotiation process where if people with disabilities had agreed to exclude some of the more, at the time, controversial folks, like people in recovery from drug addiction and particularly in the late ’80s, people who are HIV positive, that there might have been quicker passage of the bill. I’ve always been told, through legend, people with disabilities refuse to do that and said it has to be all of us, and the bill eventually passed with all of us. Can you talk a little bit about that? Jim Dickson: Yes. Addiction was not universally seen as a disability. We saw it that way, but not everybody in the community did. And there were lots of conversations about, “Well, somebody’s a drunk, do they need to be protected, too?” There was also a lot of less frank conversation, but discomfort around should this apply to people with developmental disabilities? What about people with psychiatric problems? We can’t change society’s attitudes and fears about psychological disabilities, but they’ll use that to try to defeat us. And the conversations were they’re going to try to divide and conquer, and it’s got to be all of us or none of us. And again, that process took a while to work through at the national level, but it also, simultaneous with the national conversations, was going on at city and state levels all across the country. And I do think that one real benefit, well, one unforeseen positive consequence from the passage of the ADA is it did play an important role in shifting away from the superstition and bigotry aimed at people with psychiatric, developmental and substance-related disabilities. It wasn’t necessarily a major objective, but I think it played a major role in forcing a national conversation about each of those constituencies. Michelle Bishop: So what was it like to be at the signing of the ADA after, I think it was what, a seven, eight-year fight for this bill? And it’s such a landmark piece of civil rights legislation, so comprehensive. It just must have been a really powerful moment to be there with all of those leaders in the White House then. Jim Dickson: Well, and a couple of things, the leadership, Justin, Pat Wright, Curt, Evan basically said to, and it was Evan’s relationship and Janine, his partner’s relationship with the Bushes. And I said, “We don’t want a little signing in the Rose Garden. This is a major piece of civil rights legislation. It affects everything.” And people all around the country worked, wrote, did letters to the editors. So we got to invite and hold it out behind the White House where all of those, who worked to make it happen, could come and be part of the celebration. And there was a long line to get in the White House, and Curt being Curt, he was chatting with everybody and moving up and down the line. And I was towards the end with Justin and Curt says to Justin, “I don’t have my wallet or ID. It’s in a different suit. I put this suit on this morning straight from the cleaners.” Michelle Bishop: Oh, no. And if people don’t know about Curt Decker’s suit collection, that’s a whole other thing. Oh, my gosh. Okay, what happened? Jim Dickson: Well, he didn’t have any ID, and so the guards knew Justin and Justin said, “This man is important. He needs to be here. It’s a simple human error. I’ll vouch for him. Let him in.” And so Curt got in, but there was a minute or two there where it looked like he was going to be tearing through the fence in his new suit. Michelle Bishop: Oh, that’s terrible. I know he fought hard for the ADA. And his heart must’ve been in his throat. Jim Dickson: Yep. So I sat with Bob Cooper and other folks from Rhode Island, and Evan was on the stage. Janine Bertram, Evan’s partner, had a colorful past and actually had a conviction around, I don’t remember specifically what it was, but trying to stop the Vietnam War. She broke through something, or pour blood on the records, or I don’t remember what it was. But in a big group like this, even though she had been playing bridge with George and Barbara Bush about once a month, there was real nervousness on the part of the security people about having her in the audience. And Cooper and I were assigned to sort of run interference for her. And a very genteel Texas lady aristocrat was assigned to sit between Janine and the aisle to make sure she didn’t leave the aisle. And I played my blind card with my dog, and I got myself in the aisle. And it was a riot because this woman was very nervous, and she had on a lot of jewelry, and whenever she jumped up, you could hear a jingle. And as people walked in and saw Janine, they’d all yell, “Hey, Janine,” and Janine would stand up, and people would hug, and I’d move out of the way so they’d hug. And this poor woman had mild heart attacks every time Janine stepped out into the aisle, but Janine knew she had to stay where we were. But it was a, I don’t know what you would call it, it was an ironic, funny kind of capstone story. I used a white cane in those days, and I had a little, bunch of us had American flags handheld, and I taped my flag to my cane. And whenever we’d cheered and waved, I would stick my cane up in the air and wave it with the flag on it. And at the very end of one of the network coverage, because this had never happened, there was well over a thousand people. And one of the networks picked up on that and showed the flag waving on a white cane a couple of times during this story. And after the signing, we all went back out onto the Mall and had refreshments. And Justin and Evan and Pat worked the crowd saying, “Passing this law is going to be much easier than enforcing it, and we’re going to need organized fights to force enforcement.” And some of that’ll be legal, but a lot of that has to be political public education. We were asked, people were asked to go back and meet with the editorial boards at their newspapers or TV. A lot of people had set up interviews with the local TV stations, either as they left or came back. And it was really important strategically and that the message for those who of us who were interviewed when we got home, “Oh, it was great, but it’s easier to pass the law than enforce it, and we’re going to have to work hard to get this enforced.” And that message was delivered hundreds of times to local media by the folks who had come to Washington. It was very important. Michelle Bishop: And ain’t that the truth? Jim Dickson: Yes, yes. Michelle Bishop: That predicted the next 30 years of the disability rights movement. Yeah. Wow. Jim Dickson: Yeah. We still have a long way to go. I mean, the unemployment rate is still double for the able-bodied. We still have lots of people, because disability can pop up in a family for the first time, we still have lots of people being hidden, sheltered, not integrated by their families. And unlike other civil rights movements, we have not moved yet to where people with disabilities will run for office with the disability story being central to their political message. After the passage of the Civil Rights Act, African Americans ran, arguing, debating, telling their story of discrimination. The women’s movement came along, women moved and ran on their stories. The gay rights successes came. But where were the people with disability ru

To kick off our series highlighting the fight for the passage of the Americans with Disabilities Act we have on NDRN’s founder and former Executive Director Curt Decker. Curt tells us about how the disability community came together to make sure no one was left out of the protections of the ADA and warns us about the downsides of helping getting major legislation passed in summertime in DC. Full Transcript available at: https://www.ndrn.org/resource/ndr-curt-decker/ Jack Rosen: I don’t know. I guess someone has to kick it off, right? Michelle Bishop: One of us should definitely be talking. How long have we been recording? Stephanie Flynt McEben: Like four seconds? I don’t know. It’s raining outside, y’all. It’s gross. Michelle Bishop: Are we just sitting here not recording? Jack Rosen: We’re recording. Stephanie Flynt McEben: No, we’re sitting here recording. We’re just not speaking. Michelle Bishop: Sitting here recording nothing? Jack Rosen: I guess- Michelle Bishop: We can’t put out dead air. Jack Rosen: We could. We could do a more experimental- Stephanie Flynt McEben: [inaudible 00:00:24] nothing and it’d be fine. Michelle Bishop: Experimental? Jack Rosen: Yeah, we could do a more experimental type of podcast. Maybe it’s like jazz, where podcasting is about the notes you don’t play. Is that what people say about jazz? Michelle Bishop: Is it? Just roll the opening. Welcome back to National Disability Radio. I am one of your hosts. Michelle Bishop, voter access and engagement manager at NDRN. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst with NDRN. Michelle Bishop: And our producer who keeps trying to sneaky call himself a host. Jack Rosen: Hi, producer and host. Really bit of everything. The workhorse of the podcast, if you will. Jack Rosen here. How are you doing folks? Michelle Bishop: Not the workhorse of the podcast. Okay. Okay, wait, so this is… We’re kicking off our ADA special? Jack Rosen: Yes. This is the first for our series of interviews with folks who were involved in fighting for passage of the ADA. And for this one, we have on an old friend. Michelle, you want to tell people who we have? Michelle Bishop: So for the very first in our series on the ADA, we actually have a good friend of the podcast, Curt Decker, who is actually the former executive director of NDRN. He actually founded the National Disability Rights Network in 1982 and led the organization for, what, 40 years? Yeah, yeah. About 40 years. Before that, Curt was actually the director of the Maryland Disability Law Center, which is the Maryland PNA. He was also the director of the Help Resource Project for Abused and Neglected Children. And was a VISTA worker prior to being a senior attorney for Baltimore Legal Aid Bureau. So Curt has deep roots in Maryland and the DMV and was our fearless leader for… Stephanie, were you here when… Did you- Stephanie Flynt McEben: I was very briefly. So I started in 2021, and then Curt retired in summer of 2022. Michelle Bishop: Okay, so every single one of us can say that Curt was once upon a time our fearless leader before Marlene Sallo took the helm of NDRN. So in addition to all that, Curt actually was instrumental in the creation and passage of the ADA and was on the White House lawn the day that it was signed. And he’s here today to tell us about that experience. Curt, did you go to Hamilton? Curt Decker: Yes. Michelle Bishop: I did not know that. Curt Decker: Oh yeah. That was so weird about my life. I grew up in Albany, went to Hamilton. I got accepted to Brown, but frankly, Hamilton gave me more money. So I went to Hamilton. Money was an issue. And then I ended up at Cornell for law school and took the New York bar, came down to Baltimore for one year as a legal aid attorney and never went back, and then… Never practiced law in New York, a total waste of time to take the New York bar and they still call me now to… Please, I’m long gone. Anyway. I did a couple things in Baltimore, got hired by Maryland Disability Law Center, [inaudible 00:03:37] it was called something else then. It was the very first iteration of the PNA system when it was only developmental disabilities. And then I helped… You know the story. I helped form the national association with a bunch of other execs around the country because there wasn’t anything. And then started going over to Washington because I was the closest guy there, maybe other than DC, and started representing at NAPAS it was called then, first as a volunteer, then as a paid consultant, then executive director. Michelle Bishop: What did you do when you were actually at the Maryland PNA? Curt Decker: I was executive director. I got hired. I was running a child abuse program for the state of Maryland. I knew people around. I got a call from one of my board members who was involved. She said [inaudible 00:04:23], “This new thing that just created by Congress called the Protection and Advocacy Systems, and it’s supposed to investigate abuse and neglect of people with disabilities, and we need someone to take it over and make it work.” And I said, “I don’t know anything about disability. I have no contact with the disability community at all. I never had a disability. I really didn’t have any relatives with it, so this is way…” And they said, “No, no, we don’t care. We need someone who can get this thing together and make it work.” The child abuse program was another federal grant. It was winding down, so I was like, “Okay, I’ll try it.” And I was lucky, it was right around when 94-142 came into existence, the Rehab Act. So I was like, “Oh, these are interesting legal issues. I never knew about this.” And then I went out to Rosewood State Hospital and the director there locked me in the room, the day room, with a bunch of adult, folks with developmental disabilities and tried to scare me, and it was like… Fortunately, I wasn’t scared. It was a great story. I walked in, these men were there, they looked around, there was a new person in the room. So they got all excited and they started coming towards me and it was like, “Ooh, this is interesting.” And I smiled and they all smiled and it was like… What’s when I realized that these… We tried to close Rosewood. We finally closed it in 20… I think it was 2010. I started in 1979, and it took 30 years to close that craphole down. So when I was there, there were 3000 people at Rosewood, and then eventually we kept pushing and pushing and pushing. So yeah. It was called MAUDD, the Maryland Advocacy Unit for the Developmentally Disabled, MAUDD. And I was executive director for three years. Michelle Bishop: I actually did not realize you started as the executive director. More than 3000 people in a single institution. Curt Decker: Oh, Willowbrook was 7,000. Michelle Bishop: What? Curt Decker: Those places are big. Michelle Bishop: I did not- Curt Decker: Very big, very big. I think Willowbrook, We always tell that story in the history of the P&As, it was the largest facility for people with intellectual disabilities in the world, I think. And a nightmare. You’ve seen that video a million times, I’m sure. Michelle Bishop: [inaudible 00:06:33], yeah. Curt Decker: Anyway. Yeah, so then I started, I spent some time… I left Maryland, but I was… Were working for NAPAS, but part-time I had other clients. I had clients in Annapolis I was representing. It’s now called AAIDD, but it was called AAMR at the time. I was working part-time, I was working on the CAP program, and I was sitting in the DC P&A office writing stuff, and we got the CAP program, and then we got the CAP grant, and then that was [inaudible 00:07:05]. They hired me full-time, and I think that’s when they hired Sally Rose and off we went. We had PAD and we had CAP, and then we got PAIMI and just kept going. Michelle Bishop: That’s funny. My mentor, when I started out independent living center in Missouri, and my mentor was one of the original disability lobbyists in Missouri, and he got into that work because he was working in independent living center, and they had a bill they wanted to get passed. They didn’t have a lobbyist then. So he was like, “I’ll go.” Went and found someone to sponsor the bill, and they were like, “We’ll take care of this.” And he went back to St. Louis and they didn’t do anything. And then of course, the bill went nowhere, and that was the one they learned the lesson that, if you’re not there- Curt Decker: That’s right. Michelle Bishop: Pushing for it, it’s not going to happen. And it sounds like the P&As were created, and then you understood that if you’re not there, somebody’s not in DC protecting what we have and building upon it, it’s not going to happen. Curt Decker: And that was exactly right, because [inaudible 00:08:07] I ran this child abuse program. I had done that for four years, and again, they were all over the country, a similar model. We’d have these meetings and I would say to people… And I helped organize an association of these child abuse programs, the same because they were federally funded. When I got to the P&A and I started talking to the other executive directors in the early days, ADD had money, and they brought us all together for a meeting. And it was like, who’s representing us in Washington? Well poor Marshawn, the ARC is the guy who’s [inaudible 00:08:44], “That doesn’t make any sense.” We had big fights. The first fight was whether we should have a national association. There were a bunch of Executive Directors, “People will tell us what to do from Washington if we have that.” Well, they were right, that’s exactly what happened over the years we kept saying. “Here’s a new program. Here’s a new program. Here’s a voting program. Shut up. Take it whether you want it or not.” So we had that battle and we’ve created the national association. Then we had to say, “We need dues, we need money.” And people, “Oh, no, no, no we can’t charge, we can’t use our federal money to pay dues. It’ll take money away from direct services.” We had the big fight about that. So then we created a due structure, and then that started getting us a little bit of money. That’s when they could hire me as a consultant, but each one of those developmental stages was a fight. And as you well know, we’ve been fighting ever since. Some of the P&As, “We don’t want this social security program.” “Shut up, take it. It’s great.” Michelle Bishop: I’m a little bit biased, but I’m glad that they took the voting program. Curt Decker: Yes, I guess I’m too. I worked on that. I worked really hard on that. It should have been $10 million. That was with the Help America Vote, but we only got five. What’s that turn now, about eight or nine? Michelle Bishop: Yeah. Yeah. It’s grown. Curt Decker: Yeah. Don’t get me going about history, I can go on for days. Michelle Bishop: Actually, that is somewhat the point of this- Stephanie Flynt McEben: That is the point, yes. Curt Decker: Right, right, right. Michelle Bishop: We’re doing a series about the fight for the ADA leading up to the anniversary of the ADA, and we were just hoping you could tell us about your experiences being a part of that fight to create the ADA, get it passed into law, get it enforced, all of that. Curt Decker: Sure. I can do that. Do we need to start free going here and just, or do you have specific questions or do you want me to start talking? Michelle Bishop: I feel like tell us a story. Stephanie Flynt McEben: Yeah, [inaudible 00:10:45] stories. Curt Decker: Okay. As I remember it, [inaudible 00:10:49] other people, the earliest iteration was the National Council put together a whole report on the need to… First I mean way back. We had the Rehab Act of 1974, where that banned discrimination based on federally-funded and federally-conducted programs. And from ’74 until about the late 80s that was in place. We and other people would use that to go after, again, federally-funded or federally-conducted. Somewhat broad because you had a lot of federal contractors. But people realized that that was, on the one hand, pretty narrow, and there was a whole other world out there that was not covered. So the National Council started with a proposal to do this, have a whole new discrimination bill to recover everything. It was a blueprint, it didn’t really go anywhere, but it got people organized around it. Initially, it was controversial because the original thing was it was going to be a flat earth position that everything had to be accessible. And when we started meeting with people, I met with Weicker and Tom Harkin with Bobby Silverstein and some other people, and it was pretty clear that wasn’t going to go anywhere because people would say things like, “What do you do with the New York subway? What do you do with all of these old buildings, old… With Amtrak, you just can’t mandate automatically a flat earth.” So that changed. I think Pat Wright was someone who actually came up with this idea, “We’ll go from the flat earth to a line in the sand. We’re going to dry a line in the sand the day this thing passes. Everything new is going to have to be accessible, and we’ll just live with the old stuff. There’s just not much we can do about that, and maybe over years things will get better.” And so we formed this coalition of all the disability groups. I always tell people that one of the things that I thought was terrific was that everyone sort of put down their cudgels and stopped fighting with each other and came together as a unified group. We created a grassroots group, we created a group in Washington that met regularly, and we started getting… Tony Coelho was taking the lead in the House, although he disappeared. I never ever figured out why he just left the Congress overnight. And so Steny Hoyer picked it up. And then of course, Weicker I think moved on. Lowell Weicker was very important to us as well. He’s the person I got the CAP program and the PAMI program from. He was a Republican from Connecticut. He had a child with a disability. Anyway. So we began the process and it was a pretty hard slog in terms of… Because if you think about it, now what we’re doing is we’re taking on the entire country, every business, every major organization, and they’re organized. So you have the NFIB, the National Federation of Independent Business, you have the National Restaurant Association, you have Amtrak, you have the Catholic Church. The one story I always tell people about is that the reason why churches are not covered by the ADA is pretty much because the Catholic church came in and the Senate especially, I remember that hearing really well where they came in and said, “We do not want to be covered by the ADA. We would have to hire. For example, we will have to hire people with HIV, which means they’re gay and we don’t want to have gay employees.” So there was this really interesting connection between homophobia and disability discrimination, and that’s one of the reasons why churches are not covered. And so today, the church across the street from my house in Baltimore, they just spent a bunch of money putting in ramps, but it was all voluntary because there’s no requirement. I think churches figured out that so many of their constituents are old that they better have things that are accessible. So that was one story. As I remember, in trying to kill the bill, these national associations, the two big issues at the time, ’88, ’89, were AIDS and mental health. And so the National Restaurant Association came in and demanded to have their staff of restaurants excluded. And their theory was that… It sounds ridiculous now, but I spent many, many hours, we all did, talking about blood in the salad. The restaurant association said that, “If we have to hire or keep waiters staff that have HIV, they’re going to cut themselves, bleed in the salad, and they’ll give AIDS to our customers.” There was an amendment in the House to… They called it the Chapman Amendment to try to eliminate food workers from coverage of the ADA under this whole shibboleth of AIDS. And so that was used as a sort of a stalking horse to try to throw the… People just wanted to kill the bill and so that was one way of trying to do that. The same thing was with mental health, [inaudible 00:15:59] have all these mentally ill people. Amtrak used that a lot. And we would get things like, “What are you talking about? You have people with mental illness on Amtrak now. You have no way of keeping them off.” So the idea that amendment.So then we got into all these side arguments. The Chapman Amendment passed the House, but we got it knocked out in the Senate. So that never happened. So there was no food worker exemption. Catholic Church won, but the restaurant Association did not. I spent a lot of time with, I think Congressman Dingell, time on Amtrak. One of the things that Amtrak, and you probably know this from all the work that we did later on at NDRN, Amtrak came and said, “We’re old and broken, and we have all these terrible stations, and Congress doesn’t like us and they don’t give us enough money, and there’s no possible way we could make Amtrak accessible.” And we went back and forth and back and forth, and we said, “Okay, we hear you. So we’ll give you 20 years.” There were various different negotiations like that where I think we gave over-the-road bus companies like Greyhound and Peter Pan five years, we gave Amtrak 20 years. And so there were all these… We gave city buses 30 days because the theory was that 30 days after passage, you did not have to ever… You could buy an accessible bus. And so they got one of the shortest timelines. But other people, over-the-road buses were like, “We don’t turn them over that often, so we need five years.” And as I think you probably know when we found out 19 years later, Amtrak did nothing. And that’s when we jumped in and did the report and started… And DOJ took the report and sued. And then that’s when Ken and I started meeting with Amtrak quarterly and all of that, as I tried to get them to… But it was pretty outrageous that they let 19 years go by without… And some of that was… I always tell people that some of it was on us. We didn’t pay attention. We ignored them. And we thought, “Now they’re doing it” and we never really checked to see if they were. And when we finally found out they weren’t, it was so embarrassed. we should have stayed on top of that. And then the other thing I remember is it really was a time when the entire disability community came together. And I do remember some very specific moments sitting in a congressman’s office with Lee Page from Paralyzed Veterans in a wheelchair, some blind people from NFB. And you’d get the congressman saying like, “You don’t want to cover HIV. You’ll be willing to take that out.” And they would say, “No, no. No, we’re not going to slice off unpopular disabilities from this thing. We’re going to stick together and we want the whole thing. We want everybody to be included. We’ll make these side deals depending on different industries, but basically…” And I thought that was an incredible moment when the disability community really came together and unified and said, “We’re not going to throw different people off the boat because right now they’re very unpopular.” Michelle Bishop: That’s one of the things that’s always really incredible to me about the ADA is that it was this moment where the community stood together and the definition of what a disability is and who’s protected being so incredibly broad, I think is so powerful. I did not know. The homophobia that was wrapped up and all that is wild to me. I’m not eating a salad with anyone’s blood in it. Curt Decker: Right, exactly. Michelle Bishop: That’s when you send it back. Curt Decker: Right. That’s right. Or even with a hair or a roach for that matter, but it’s like… Yeah. And that was an side issue in there that [inaudible 00:19:47]. Because if you think a

After three years, Jack has finally gotten Stephanie and Michelle to do an episode about sports. And not just any sport, but golf. In this episode we sit down with Josh Basile, Andrew Mitchell, and Kate Strickland to talk about AdapTee Golf, what it means to reclaim sports as a person with a disability, and how to play the ninth hole at Sligo Creek Golf Course. Learn more about AdapTee Golf at: https://adapteegolf.com/ Learn more about Determined2Heal, Josh’s foundation focused on people with spinal cord injuries at: https://www.determined2heal.org/ Full transcript of this episode available at: https://www.ndrn.org/resource/ndr-june25/ Jack Rosen: So either of you watched the US Open this weekend? Stephanie Flynt McEben: No. Michelle Bishop: I did not. Jack Rosen: Well, that is an anticlimactic way to kick off this one then. For those who are interested in golf, J.J. Spaun won. It was his first major win. He sunk the putt on the last hole to be the only person over or under par at Oakmont. So that was very cool. And our guests on this episode would be interested in that and maybe no one else. Hopefully at least two of our listeners. Michelle Bishop: Jack, you open this episode talking about a golf tournament, you know full and well me and Stephanie don’t know anything about golf. Stephanie Flynt McEben: Where’s the cricket sound? I- Jack Rosen: But I guess you guys are about to learn quite a bit about golf, specifically adaptive golf. Michelle Bishop: That’s cool. We’re going to do the intro to the whole episode where we introduce ourselves or Jack is going like hella rogue today. Stephanie, how do you feel about this? Stephanie Flynt McEben: Yeah, I’m over here like, “Wait a second. We’re not good at” … I do appreciate the confidence in us, though. Michelle Bishop: I … Yeah, [inaudible 00:01:08] the episode. Stephanie Flynt McEben: What else are you going to do? Michelle Bishop: Don’t I kick off the episodes? Stephanie Flynt McEben: But this is probably the cold open. Michelle Bishop: You miss one or two episodes that get recorded when you’re traveling or so sue me that time my car broke down and now Jack’s just in here taking over the whole operation. Stephanie Flynt McEben: Man. Michelle Bishop: Wait, is this a cold open? Stephanie Flynt McEben: I figured it … I don’t know because we know nothing about golf, so I figured that Jack was just like … I don’t know. Michelle Bishop: Why don’t we ever talk before we record an episode? We could put some level of planning into this. I mean, obviously not for this episode, it’s too late now. Well, Jack, I have to say as our pro host extraordinaire that I think this month’s episode, this topic is truly your jam more than me or Stephanie will ever comprehend. So I think you have to tell the people what this episode is about this month. Jack Rosen: I’m excited. I finally did it. I finally got us to do a sports podcast. It has been years in the making and I am so excited that we got to do it for this sport, my favorite one, golf. Today, we have on Andrew Mitchell and Josh Basile and Kate Strickland with AdapTee Golf. They are here today to talk about this innovative, exciting way of playing golf for those who are physically unable to swing a golf club. Josh and Andrew invented it, which is pretty cool, and I am so excited to have them on today. I will let them introduce themselves. Josh, do you want to kick us off? Josh Basile: Absolutely, Jack. And Michelle, it’s so great to be here today. So my journey into paralysis started out two decades ago. I was on a family vacation at the beach in Delaware and turned my back to a wave. Wave picked me up and slammed me head first against the ocean floor. As an 18-year-old, I heard a loud crack and it was my fifth cervical vertebra bursting. And since then, I’ve been paralyzed below my shoulders. I was first on a ventilator, I was able to wean off that, and then was able to go through the different hospital systems and found my way home after about three months of hospitals. And when I did return home, even before my injury, when I was … Actually, the moment after my injury when I was pulled onto the beach, I remember my dad running down to the beach, my friends got him, and he looked at me and I was like, “Dad, what about our tea time tomorrow?” It was something that I was looking forward to all summer long just to be able to play with my dad. And he’s like, “Josh, we’re not going to be able to make this one.” But when I did return home, I always just had a dream of the game of golf and being able to play again, but physically, I couldn’t. So that’s just a little bit about me. Or the other thing I would share is I started a nonprofit and went through the vocational system in my state of Maryland, and ended up going from community college to undergrad to law school, and now I’m a practicing attorney for the last 13 years. So that’s a little bit about me and I’ll throw it over to Andrew. Andrew Mitchell: Hi, Jack, Michelle, esteemed audience. Thanks for having me today. So Josh and I have been friends since I think fourth grade, and Josh beat me up on the tennis court and our lives went different directions and we reconnected with each other while we were taking a few classes at a local community college and we both connected over poker and golf. So I was on the slingshot with Josh, I don’t know, starting, what would you say, Josh, like 12 years ago maybe was the first time I ever did it with you. Josh Basile: 12, 15 years ago was when this all started up. Andrew Mitchell: Yeah, something in that range. So we stayed friends and got on the golf course maybe two or three times a year, and I was in between degrees at UMBC and Josh needed a little help with daytime caregiving. I decided to help out for just a few weeks, and then a few weeks turned into March 14th, 2020, and I was very lucky to have a job. So I just decided, “Okay, I’m going to take everything I can learn from someone who excels in his field, and I’m going to take everything I can learn about caregiving and just see what I can make of this.” And in that experience, we found that golf was one of the only things we could do that was safe during the lockdown. So we had such a good time golfing. We came across a piece of equipment that Rick Shiels had done a video on, the Swingless Golf Club, and that was the final piece of the puzzle to get us starting from the tee box with everybody else and had an incredible time putting all those pieces together. Josh’s invention, the pendulum putter, his way that he was able to put the slingshot together with all the degrees and the degrees that we use on the pendulum putter, degrees, power, et cetera. And then the Swingless Club, it was such a good experience being able to get out there and play and sharpen Josh’s skill with the game that we collectively we’re chewing on this dream of how do we bring this to the rest of the country because there was just no way that we were going to be the only ones enjoying it the way that we were. So we applied for a grant from the Craig Neilsen Foundation last year. So 2024, around April, we got the confirmation that we got the grant. I want to say was it late August last year? Josh Basile: Yeah, it was during the Adventurous weekend. We were bringing 50 families to an annual event that we do in Virginia Beach. So it was mid-August, I could tell you the date. Andrew Mitchell: Yeah. And so I got the news when Josh invited me down to just put on a clinic with the folks on the Adventurous weekend and changed my life. So here we go. This is what I do now and I’m trying to build awareness for the program. I’m taking folks out on the course. I’m hosting events with Josh, and you’ll meet our other guest on the podcast here, Kate Strickland. She’s one of our fiercest competitors in the program. And this has just been a dream. It’s a dream come true to be able to spend my life helping out the disability community, the mobility disability community, and to be able to permanently grow the game of golf. Josh Basile: So Jack, just to give you another little background of the golfing journey per se. Basically when I did return home from the hospital and being paralyzed below my shoulders, I started going back out to golf courses with my friends and family, and I would always get on the course, but I’d be a spectator. And for about five years after my injury, just I kept going back and I loved it. I loved being out there. I loved being surrounded by green grass and by trees and by the wind, by the sun, and that was just super special. But every time I left the course, I would always be frustrated because I mentally had the game to play, but I couldn’t pick up a club or grab a club and swing it like I used to. So one night, I ended up having a dream of this putting apparatus that could swing back and forth like a pendulum off of a pole and just go back and forth, back and forth. And next thing I know, that next day, I went to the hardware store, got all this PVC pipe, an old putter, and rigged together the pendulum putting device that could strike a golf ball and was able to bring it out to my local golf course and it worked. And so that said, you know what? I could get the ball in the hole. How do I get the ball to the green? And at that time, tested a bunch of things out. We found that the easiest way to advance a golf ball was a slingshot where you could have somebody put the ball in the pocket and basically I’d be behind a caregiver or a family member or friend who would be operating it and I could direct them pulling it back. And depending on the power you pull it back or the angle of the slingshot in the air, you can basically drop it wherever you want on a golf course, anywhere from five yards to sometimes over 150 yards depending on the strength of the person. They can go more than a football field and just drop the ball. So that’s how we played the game of golf. We called it slingshot golf for the first 10 years. And then Andrew was mentioning during the pandemic, we saw this video of the Swingless Golf Club that uses blank and nail gun charges to shoot a piston out of the face of a club. So you actually just put it right behind the ball. And as the adaptive golfer myself of Andrew’s raise his hands, lowers his hands, basically manipulate the face of the club so I can actually shape the shot that I want, and then the piston comes out and strikes the ball and you can calibrate a shot anywhere from 75 yards to 200 plus yards, which now let us move back to the tee boxes to play the game of golf. And since then, we’ve now brought it out to hundreds, probably over 500 players have experienced our form of adaptive golf, and we’ve really brought hundreds of players since the pandemic to really experience this new form of AdapTee Golf. Jack Rosen: So I have so many questions about AdapTee Golf, but I think since you mentioned new players, I think we should also mention we have Kate here who has picked up AdapTee Golf recently and I’ve heard from you guys is quite good at it. So Kate, why don’t you tell us a little bit about how you came to AdapTee Golf and what it’s been like for you? Kate Strickland: Sure. Thanks, Jack, and thanks for having me on this podcast with you all. I came to AdapTee Golf mostly by chance. I am an attorney in DC. I’m also quadriplegic from a spinal cord injury when I was a cyclist almost, I guess, 11 years ago. And I recently moved to the DC area to start a job with a law firm in DC. And when I was in law school, I was connected to Josh because he was a quadriplegic attorney who I could reach out to as a resource to just ask how to be an attorney while also disabled, which seems a bit more challenging than one might otherwise expect. And so I had this connection, and when I moved to DC, I had reached out to Josh just to say, “Hey, I’m here. I’m excited to actually be in your area now that you do all of these great things.” And one of the first things Josh asked me is if I wanted to go golfing with him the very next day, actually, for his birthday. And as someone who has never played golf before, had never really seen golf beyond just watching it on TV when my grandparents were over, I had no idea how we were going to play golf, but I figured if Josh could do it, I could do it. And so I said yes. And then the next day, we went out to Sligo Creek Golf Course, which was a bit intimidating honestly at first because I got up to the course first and I felt very out of place when I first got there because I was a person in a chair. And everything I knew about golf up to that point was that it was a game for people without disabilities. And it was … I wasn’t sure how these golfers are going to view me in my chair at this venue. And what I found out that day is that, first of all, Sligo Creek is the most inclusive and welcoming place that I could have gone to for golfing. And also that Josh and Andrew have cracked the code and we definitely can golf and it’s a lot of fun and it is a wonderful way to get outside in the sunshine and fresh air, especially me as an attorney who I spend most of the time behind my computer. So I’ve enjoyed golfing ever since I started, which was, I guess, mid last year, mid to late last year. Jack Rosen: And I guess what has drawn you to golf, I mean, out of the various adaptive sports? I know you got this opportunity with Josh. I guess for me, and I’ll get more into this, but one thing I really like about golf is that I always joke that for four hours, I get to forget all of my problems and instead focus on a new one, which is I’m not very good at golf, but it gives me just a few hours to clear my head. What’s it been like … What does it mean to you? Kate Strickland: I think it’s similar. Being out on the golf course, it’s generally peaceful. Of course, there’s some frustration when the ball doesn’t go exactly where you’re anticipating it to go. But it’s a really fun way to use my brain and to think about distances and angles and powers and really try to make the ball go exactly where I want it to go and I can stop thinking about all of my caseloads and whatever else is going on in my life. Plus, I, so far, have gone out with Andrew as my caddy and sometimes Josh joins, sometimes it’s just Andrew and I, and it’s just so fun to hang out with like-minded people who really enjoy what we’re doing. So I’ve always just wanted to go out to hang out with friends, but also to … I mean, the way we play, sure, we’re not actually swinging a club, but it is golf and we are facing the same technical, mental calculations and challenges that any golfer would face. And it’s a really cool way to get back into sports without, for me, the fear of tipping over in a kayak or some of the other adaptive sports that are out there. So I’ve always enjoyed it. Plus, I love being outside. I was a cyclist, so I used to spend all day on a bike in the sun and this is a great way for me to get back outside in a bit more controlled way. Jack Rosen: And Josh, I guess I’ll pose the same question to you. I mean, I think I have a guess what golf means to you given, as you said, you dreamed of a way to get back on the course and then made it reality. But tell me a little about what golf means to you. Josh Basile: There’s a little noise going by me, just give me one second. For me, golf is sport. Sports before my injury, in many ways, defined a big part of my childhood. I loved the ability to compete. I love the ability to push myself to be in a situation where I had to make that shot or I had to come up with the right next move. And being able to get back out there after my injury was really something that was missing from my life for so, so long. And when I was finally able to put together the puzzle of making the ability to advance a golf ball from tee box to fairway to green and into the hole, it just was like one of those moments was like I’m onto something. Or together with bringing out other people, we tweaked it so many different ways to get it to the game that it is today. It’s not only fun, but I feel like an athlete again, even though I’m paralyzed below my shoulders. I literally cannot move my arms, my fingers, my hands, my legs. I can dance my shoulders a little bit, and I can move my head left and right, and I’m out there on a golf course. And there’s times because the game of golf that we created, it’s like a live video game, there’s very little human error. You just really have to make the right decisions and shape the shot and then execute. And with that being said, at Sligo Creek where we take a lot of families, and we really play on public golf courses across the US, we played overseas, we played around the world. There’s a lot of courses in this world. But with that being said, we played a lot at Sligo to the point now that we shoot under par. We have a negative handicap, which, in the golfing world, it’s funny that they use the word handicap, but we’re usually the best player on that course that day, which being paralyzed, it’s funny to see that. And we get out there, and I know later on, we’re going to talk as a little teaser about what Kate and Andrew and I did last month at Sligo in a golf tournament, a match play event, that we were participated in. But it’s one of those things that it’s a game for all abilities. You don’t have to have a spinal cord injury to play it, you just have to have a willingness to try. You can be paralyzed, you can be an amputee, you can have any disability or no disability and experience the game of golf the way that we are approaching it. And it’s a great way to turn heads, but it’s also a great way to have fun. And even at like Saigo Creek, it’s one of those inclusive places where they even have soccer golf there, where you actually can play golf with a soccer ball, and they have different holes lined up throughout the course. It’s just golf, to me, is such a beautiful way, as we’ve all said, of getting out of the house, forgetting about your day-to-day life and problems and just having fun or struggling through a course, which is that mental battle and the puzzle of getting from the start to in the hole, which luckily at Sligo, you got nine holes, which I even think over time I’m actually enjoying it even more than 18 holes because golf can be pretty long, and having just nine holes, it’s just the perfect taste. A lot of people love 18 because after the first nine, they feel like that’s the warm up. And then the back nine, they can really get their game on. But anyways, that’s a little bit about AdapTee Golf that I wanted to share. Michelle Bishop: You guys are actually making me want to take up golf now. It sounds amazing. I also am someone who enjoys being outdoors on a beautiful sunny day. Let me say this, outside, I’m not outdoorsy, I’m outsidey. I’m not trying to be hiking in the woods. So I feel like a golf course might be the right zone for me to get my outside time and my sunshine without woods, but I digress. I wanted to ask, as someone who doesn’t know a lot about golf, with AdapTee Golf to … I guess everything that I know about a golf caddy comes from what they tell you in the movies and on TV where the caddy … You have a relationship with your caddy, maybe they make some recommendations, I suppose, when you’re getting ready to swing or picking your club or I’m really trying to sound like I know what I’m talking about. And I was wondering to what extent AdapTee Golf mimics that relationship between the golfer and the caddy or if it’s a little bit different than how we think of that traditionally. Andrew Mitchell: I’m happy to take this one. So when I’m performing at the caddy or Josh and I are out there playing around together, I have the job of it being a conversation about I see this putt this way and I think it’s got this much break and we think it’s a 35-degree putt and this is our aim point. All these little things that … In able-bodied gol

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